Proceedings: First Colloquium on Preventing Secondary Disabilities Among People with Spinal Cord Injuries. February 27-28, 1990, Atlanta, Georgia.

Edited by Philip L. Graitcer, D.M.D., M.P.H. and Frederick M. Maynard, M.D.  Published by the U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, at the former Center for Environmental Health and Injury Control, Division of Injury Control and Disabilities Prevention Program.

Sponsored by: National Council on Disability, Association of State and Territorial Health Officials, American Spinal Injury Association, National Academy of Sciences, Institute of Medicine, National Institute of Disability and Rehabilitation Research, and the Centers for Disease Control

This proceeding was scanned and reformatted in 2003 by Dionte Johnson, Disability and Health Team Fellow, Tennessee State University.

(Please use Web citation if citing this reformatted document - 67 printed pages)

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TABLE OF CONTENTS (32 links)

Forward
Introduction
Executive Summary
Charge to Participants
A Framework for preventing secondary conditions:
Data Sources
Functional Expectation in Spinal Cord Injury
Injury Interventions in Public Health Practice
Setting the Conceptual Landscape
Workgroup Reports:
Cardiovascular-Cardiopulmonary Secondary Disabilities
Genitourinary and Bowel Secondary Disabilities
Neuromusculoskeletal Secondary Disabilities
Psychosocial Secondary Disabilities
Skin-Related Secondary Disabilities
Abstracts from the workgroup Presentations:
Cardiovascular Health with Functional Electrical Stimulation
Effects of Physical Activity on Lipoprotein Cholesterol
Pulmonary Complication Prevention
Surgical Management of Neurogenic Bladder
Genitourinary Complications
Epidemiology and Importance of Urinary Tract Infections
Infertility in Males with Spinal Cord Injury
Heterotopic Ossification
Neurological Recovery
Musculoskeletal Complications
Community-based Support Services
Life Satisfaction Survey
Alcohol and Other Drug Abuse
Minorities with Disabilities
Microvascular Wound Reconstruction
Computer Applications for Evaluating People at Risk for Pressure Sores
Clinical Prevention of Decubitus Ulcers
Reducing Risk of Pressure Sores
Appendices
Bibliography
Colloquium Participants

FORWARD

William L. Roper, M.D., M.P.H.
Director, Centers for Disease Control

In late February 1990 the Centers for Disease Control (CDC) and five other groups—the National Council on Disability, the Association of State and Territorial Health Officials, the National Institute on Disability and Rehabilitation Research, the National Academy of Sciences/Institute of Medicine, and the American Spinal Injury Association—convened a unique assembly.

For the first time, health care professionals, public health officials, and consumers joined together to develop research and public health strategies to prevent the debilitating secondary disabilities that adversely affect so many people with spinal cord injuries and keep them from leading independent lives. This report is the result of 2 days of intensive debate, discussion, and deliberation. It combines the varied perspectives of the meeting’s many capable and committed participants.

I thank those participants for their time, energy, and resolve and thank the sponsoring bodies that joined with CDC and worked so hard to make the colloquium a reality. This volume is an important step in promoting health and preventing illness in people with spinal cord injuries.

INTRODUCTION

Philip L. Graitcer, DMD, MPH
Division of Injury Control, Center for Environmental Health and Injury Control
Centers for Disease Control  and

Frederick M. Maynard, MD
Department of Physical Medicine and Rehabilitation
University of Michigan Medical School

This colloquium is a historic first meeting of public health and rehabilitation professionals and people with spinal cord injury dedicated specifically to the prevention of secondary disabilities that occur in people with spinal cord injury. The colloquium was designed to consolidate knowledge about the epidemiology, etiology, treatment and costs of these secondary disabilities and to develop a research, clinical care, and public health agenda for their prevention.

Secondary disabilities have a substantial impact on people with spinal cord injury. During their postinjury lifetimes, nearly all experience pressure sores. Clinical depression may be five times more prevalent than in the general population. Urinary tract infections are almost inevitable. Fertility problems affect most spinal-injured men. Pain, contractures, and spasticity are common occurrences. Treatment for these disabilities, when available, is costly and may not be reimbursable by insurance or medical assistance programs. Untreated, these disabilities can result in handicaps that affect the quality of life and deprive the spinal-injured person of his or her independence.

Despite their pervasiveness, little is known about the risk factors that are responsible for the occurrence of secondary disabilities, their distribution in the spinal-injured population, effective treatment for such people, personal behaviors as controlling factors, or personal and public-health interventions that might prevent secondary disabilities. 

Although much progress is being made in treating people with certain secondary disabilities, much more needs to be done. We have focused our efforts during this colloquium on three areas: epidemiology. clinical research, and prevention and care. 

Epidemiology - Information on risk factors associated with secondary disability, including gender, aging, and type and completeness of injury, needs to he collected. Sources of data on secondary disabilities need to be identified and evaluated. Uniform case definitions for secondary disabilities are critically needed. 

Clinical Research - The natural history of secondary disabilities needs to be described more fully. What complications result in disabilities and handicaps? Prevention and therapeutic strategies should be evaluated by using multi-center trials. The impact of psychosocial factors, such as drug and alcohol abuse and clinical depression, on secondary disabilities needs to be examined. 

Prevention and Care - Strategies to prevent secondary disabilities should be part of continuing care for people with spinal cord injury; these strategies should include the application of early and consistent prevention interventions. Public health agencies can play a primary role in preventing spinal cord injury and in evaluating these primary prevention interventions. In addition, public health departments can stimulate and help groups that support independent living for the spinal-injured person and can lend surveillance and epidemiologic expertise to evaluations of treatment and prevention strategies for secondary disabilities. 

The colloquium was cosponsored by the National Council on Disability, the Association of State and Territorial Health Officials, the National Institute of Disability and Rehabilitation Research, the American Spinal Injury Association, the National Academy of Sciences, lnstitutes of Medicine, and the Centers for Disease Control. This meeting could not have been held without the suggestions, encouragement, and enthusiasm of many people. We thank Marcus Furher, Lesley Hudson, Mark Richards, John Shatzlein, and Kent Waldrep for their suggestions, ideas, and help in inviting many of the experts who attended this meeting. Mark Long and Joe Smith capably handled many of the administrative and organizational details for this colloquium. The Center for Disease Control’s Disabilities Prevention Program provided substantial support for the colloquium. We especially thank Larry Burt, the program’s coordinator, and Vernon N. Houk, Director, and Jack Jackson, Deputy Director, of the Center for Environmental Health and Injury Control for their efforts.

EXECUTIVE SUMMARY

The First Colloquium on Preventing Secondary Disabilities Among People with Spinal Cord Injuries was held in Atlanta on February 27-28, 1990, to assess state-of-the-art prevention strategies and interventions. Cosponsors were the Centers for Disease Control (CDC), the National Council on Disability, the Association of State and Territorial Health Officials, the National Institute on Disability and Rehabilitation Research, the National Academy of Sciences/Institute of Medicine, and the American Spinal Injury Association. 

About 100 people representing the public health, rehabilitation, and consumer communities participated. They discussed the various terms and strategies used in rehabilitation and public health practice and worked to establish a common framework for examining secondary disabilities. Participants were assigned to workgroups focusing on five secondary complication areas: cardiovascular-cardiopulmonary, genitourinary and bowel, neuromusculoskeletal, psychosocial, and skin. Each group assessed the incidence and prevalence of the secondary disability, its epidemiology and its associated costs as well as available prevention strategies, research needed to develop new prevention strategies~ and the public health’s role in prevention. Workgroup leaders then presented their recommendations, which are summarized as follows: 

General Recommendations - The following are directed to CDC and other public health officials: 

• Develop uniform case definitions for secondary disabilities.

• Design objective techniques for collecting data on risk factors associated with secondary disabilities.

• Study the incidence and prevalence of secondary disabilities, and use the data to predict risks for people with spinal cord injuries (SCI).

• Conduct multi-center trials to test and develop new preventive and therapeutic interventions that can be applied in clinics and at home, and study ways to modify equipment such as wheelchairs and pressure sore-prevention devices.

• Establish centralized public networks to inform people about spinal cord injuries, secondary disabilities, and prevention strategies.

• Develop wellness programs for people with SCI to promote health and prevent related diseases and rehospitalization.

•Train health care professionals to educate patients about ways to prevent complications from becoming major medical problems.

• Study the costs of treating secondary disabilities and current private insurance and Medicaid coverage for people with spinal cord injuries and secondary disabilities. 

Specific Recommendations of Each Workgroup 

Cardiovascular-Cardiopulmonary Secondary Disabilities

• Focus on interventions to prevent the development of cardiovascular-cardiopulmonary disabilities and promote health, such as weight control or blood pressure control programs and campaigns that encourage people with SCI to increase their physical activity, stop smoking and abusing drugs, reduce alcohol consumption, and improve their diets.

• Evaluate the efficacy and cost of offering special cardiovascular conditioning programs, such as arm exercise regimens or functional electrical stimulation to contract muscles. 

Genitourinary and Bowel Secondary Disabilities

• Survey treatment centers that provide electro-ejaculatory stimulation to assess their interest in pursuing further research in male infertility. In addition, conduct research on infertility among female SCI patients, and improve the dissemination of facts regarding pregnancy and birth control.

• Study the differences in bladder management for males and females, and disseminate outcome data from case-control studies to help public health officials standardize bladder management techniques, define quality of care, and establish treatment goals for people with SCI.

• Standardize prophylactic treatments and methods for preventing long-term complications associated with urinary tract infections.

• Study the use of anticholinergic medications and their long-term effects on bowel function, and fund training of public health officials in administering bowel programs.

Neuromusculoskeletal Secondary Disabilities

• Assign a portion of highway fines; alcohol, agricultural, and construction taxes; and sport and hunting license fees to fund programs for preventing secondary disabilities. This would place the economic burden on people who engage in high-risk activities that can lead to spinal cord injuries.

• Study occupational settings to improve ergonomics specifically for people with SCI, which would improve their productivity and chances for career advancement.

• Study older people with spinal cord injuries to develop strategies for preventing overuse injuries. Evaluate holistic treatment approaches such as the use of attendant care or energy-conserving equipment, which could prevent injuries and prolong the person’s years in the

• Establish a long-term surveillance system to determine the incidence, prevalence, etiology, and risk factors for handicaps and for diminished subjective well-being among people with SCI.

• Support studies that document the environmental and societal constraints on people with SCI, that have long-term rather than “one shot” designs, that focus on treatment outcomes related to psychosocial variables, and that concentrate on problems which surface after the SCI person has returned to the community. 

Skin-Related Secondary Disabilities

• Study people with SCI to define which tissues are at risk for developing pressure sores and to identify methods for improving tissue status and techniques for changing behavioral factors that cause pressure sores.

• Identify gaps and barriers in the health care delivery system that might increase pressure sores among people with SCI.

• Update licensing standards for facilities that provide acute care, rehabilitation, and long-term care to people with SCI.

• Encourage interaction with vocational rehabilitation programs for people with spinal cord injuries.

CHARGE TO PARTICIPANTS

Arthur C. (Jack) Jackson, Deputy Director
Center for Environmental Health and Injury Control, Centers for Disease Control

On behalf of the Centers for Disease Control (CDC), I would like to welcome each of you to Atlanta, and I would like to thank Dr. Philip Graitcer, who’s thanked everybody else, for putting this meeting together, and Fred Maynard, Chairperson of the Planning Committee, for making this meeting possible. Unfortunately, Dr. Vernon Houk, who has a great interest in this area, is on his way to Johnston Atoll in the mid-Pacific. He would rather be here than on his way there, believe me. I am, however, delighted to provide a charge to this colloquium.

This colloquium is a historic meeting of the public health, rehabilitation, and consumer communities. It provides a unique opportunity and challenge to all of us to become more effective in our efforts to prevent secondary injuries in the person with a spinal cord injury, and it can serve as a model in addressing the problem of secondary disabilities in other populations with disabilities. This colloquium is unique. It is the first meeting that has been entirely devoted to the prevention of secondary disabilities in the person with a spinal cord injury. It also offers the sponsors their first opportunity to work together, and we look forward to building on this relationship.

Plans for this colloquium, and CDC’s interest in the prevention of secondary disabilities, can be traced to the publication in 1985 and 1986 of two landmark documents: Toward Independence and Injury in America.’2 Prepared by the National Council on Disability, Toward independence provided Congress with an assessment of laws and programs affecting people with disabilities.(1, 2) Among other recommendations, the report called for a Federal initiative to prevent disabilities through the coordination of prevention programs at the local, State, and Federal levels. CDC began this initiative with a $3.8 million appropriation that established State-based and institution-based programs in disabilities prevention. This initiative would not have occurred when it did had it not been for the foresight of Sandy Parrino, Michael Marge, Kent Waldrep, and other members of the National Council on Disability.

Injury in America, the second document, was prepared by a select committee of the Institute of Medicine. The committee examined injuries as a public health problem and recommended that the Federal government take a leadership role in the conduct of research to prevent and control injuries by using public health principles. CDC initially received $10 million from the Department of Transportation (DOT) as a result of an appropriation by Congress to DOT for this effort. Two programs in the Center for Environmental Health and Injury Control— the Disabilities Prevention Program and the Division of Injury Epidemiology and Control—were created to respond to these initiatives.

The development of these programs has been challenging. We’ve learned new terminology, new methodologies, and new sensitivities, and we’ve had the opportunity to meet and work with numerous individuals and groups concerned with injury and disability. It has been exciting. The comments of those with a disability and the comments from the National Council on Disability have helped to increase our sensitivity to accessibility, funding, and transportation issues. We’ve learned about rehabilitation issues from the American Spinal Injury Association and the National Institute on Disability and Rehabilitation Research, and we’ve become familiar with the continuity of care and medical cost issues as a result of our work with the National Head Injury Foundation and the Institute of Medicine.

This colloquium marks the beginning of our joint efforts to develop research and prevention strategies to prevent secondary disabilities in people with spinal cord injuries, though we have already begun to establish a broad base of primary injury and disability prevention efforts. Although not a part of this colloquium, CDC’s disability prevention activities are also addressing developmental disabilities and selected chronic disease conditions. First, let me discuss accomplishments.

We have been developing a public health infrastructure in many ways. We’ve awarded nearly $7 million in extramural grants for disability and injury prevention programs in State and local health departments. As a result, nine States entered into cooperative agreements to develop disability prevention programs, and 16 State, county, and city health departments have received grants to develop injury prevention programs.

In the area of methods of research, CDC has cooperative agreements with the University of Michigan, the Arkansas State Spinal Cord Commission, the University of Montana, and the University of Alabama at Birmingham to determine the incidence and prevalence of secondary disabilities and to assess the effectiveness and cost of interventions designed to prevent secondary disabilities. You will hear more about these projects during the colloquium.

We developed guidelines for the surveillance of head and spinal cord injuries by health departments, and we have worked with the Association of State and Territorial Health Officials to make traumatic spinal cord injury a reportable health condition. We’ve awarded more than $750,000 to health departments to develop model systems for the surveillance of injuries and disabilities. In the area of policy, the Secretary of Health and Human Services has established a National Advisory Committee for Injury Prevention. CDC and the National Council on Disability, as you’ve already heard, have contracted with the Institute of Medicine (IOM) of the National Academy of Sciences to establish a committee to review the disability problem in the United States. IOM is developing recommendations for a national agenda for disability prevention. Using data gathered from community disability programs and from people and organizations active in disability prevention, we’re seeking to establish a broad national consensus on future directions in disability prevention. The IOM report is expected in early 1991.

Now let me turn to current and future directions. We hope that this colloquium will serve as the ground-breaking event in efforts to develop strategies to prevent secondary disabilities in the person with a spinal cord injury. We will be publishing, as you’ve already heard, proceedings from this colloquium, and we hope that, like Toward Independence and Injury in America, the proceedings will be a sentinel work in the field of secondary disability prevention. The background, talents, and experience of the colloquium participants are impressive. Let us join together to develop a strategy for the prevention of secondary disability in the spinal cord injured.

So that we can accomplish this objective, let me ask you to pay special attention to the following needs. To develop an effective epidemiological research and prevention strategy that will address secondary disabilities in the person with a spinal cord injury, we must establish a common vocabulary. Terms such as disability, secondary disabilities, secondary complications, and physical limitations and impairments are frequently used interchangeably. We need to establish common usages for these terms that will apply in our public health prevention settings. The Institute of Medicine has already devoted considerable time to this issue, and we hope that Andy Pope and members of the committee who are present will share their thoughts with us during this meeting.

We must determine ways to measure the costs of secondary disabilities. This should include not only hospital, provider, and therapy costs, but also personal care, home renovation, transportation, and other day-to-day living expenses faced by the person with a secondary disability.

We must identify data sources for secondary disabilities. Data on secondary disabilities are scarce. This scarcity makes priority setting and program evaluation dependent on inaccurate and sometimes even anecdotal data. We know little about the epidemiology of secondary disabilities. How are they distributed in the community? Whom do they affect? How serious is each secondary condition? Do all people with secondary disabilities need medical attention? How many secondary disabilities can be prevented by early intervention?

We must evaluate intervention prevention strategies. What prevention strategies have been used to prevent secondary disabilities? Are they effective? Can we use these strategies in a public health setting? What prevention strategies are promising? Do they need to be further evaluated?

We must determine the best role for the public health community and CDC to play in the prevention of secondary disabilities. How can we best support the development and implementation of strategies to prevent secondary disabilities? What are the research needs? What should be the role of public health agencies in the prevention of these secondary disabilities? We must determine the need for prevention approaches and services from the perspective of the person with a primary or secondary disability, or both.

And finally, we must learn more about the technology and independent-living resources that enable the person with a disability to function more effectively in his or her environment. The assessment of these technologies and the impact of these independent living resources on a person’s effective functioning in a community are of great concern in developing a strategy for the prevention of secondary disabilities.

This is indeed a Herculean task for a 2-day meeting. I am confident that we can make some headway toward completing it. In closing, I would again like to express to you CDC’s gratitude for your participation. I urge you to focus on the questions that are in your colloquium material. We are addressing significant public health issues that are crying out for attention. Thank you for your attention, and enjoy your stay in Atlanta.

References

1. Committee on Trauma Research, Commission on Life Sciences, National Research Council, the Institute of Medicine. Injury in America: a continuing public health problem. Washington, D.C.: National Academy Press, 1985.

2. National Council on the Handicapped. Toward Independence. Washington, D.C.: U.S. Government Printing Office, 1986.

A FRAMEWORK FOR PREVENTING SECONDARY DISABILITY (21 pages)

Data Sources for Spinal Cord Injury

Joseph E. Sniezek, M.D., M.P.H., Medical Epidemiologist
Division of Injury Control, Center for Environmental Health and Injury Control
Centers for Disease Control

In the past, epidemiologists have been described as physicians who can count, and this counting, of course, referred to infectious diseases.(1) Certainly, epidemiologists do more than count today, and the field of epidemiology addresses more than just infectious diseases. We now address occupational and chronic diseases and, most importantly from my point of view, we address injuries.

This meeting certainly illustrates the expansion of the field, and it’s certainly consistent with the definition of epidemiology as the science of the occurrence of disease or injuries in human populations.(2) Injuries, like infectious diseases, are preventable health events, but only recently have they been addressed from a public health perspective. Today and tomorrow, we are considering a public health approach to secondary disabilities in those persons with spinal cord injury.

In my talk this morning, I’d like to discuss surveillance data and what it can do for us and to contrast surveillance with epidemiologic studies. Surveillance data and epidemiologic research data are different, and we need to appreciate their differences and limitations.

Surveillance is defined as the ongoing systematic collection, analysis, and interpretation of health data needed for planning, implementing, and then evaluating public health programs. The timely dissemination of the data to those who need to know is an integral part of surveillance. Public health surveillance involves collecting data and using them to tell us whether we need to take action, and they should also tell us if the action we took was effective.(3) 

So why do we conduct surveillance? Surveillance can provide us with a quantitative estimate of the magnitude of the morbidity and mortality of a health problem, identify clusters of injury events, identify factors in injury occurrence, and stimulate epidemiologic research. An important function of surveillance is to measure the effectiveness of prevention strategies.

We can illustrate surveillance by using AIDS and spinal cord injury as examples. Surveillance for AIDS has been done by making AIDS a reportable health condition. Surveillance has allowed public health professionals to describe the geographic patterns, the age and sex distribution, and the modes of transmission of this major public health problem.(4) The Federal Government has recommended that spinal cord injury be made a reportable health condition.(5)

Specifically, our purposes for conducting spinal cord injury surveillance are to better define the incidence of these injuries on a national level. As most of you realize, there’s no adequate national data source to describe the incidence of spinal cord injury on a national level. We also want to identify high-risk groups. Although available data identify adolescent and young adult males as high-risk individuals, risk groups might differ by geographic area. Surveillance can identify groups at State and local levels. Identification of high-risk groups will allow us to target our prevention strategies. We want to better define etiology so that additional prevention strategies can be developed and implemented. In addition, we want to evaluate prevention programs. We want to know if our prevention efforts are effective in reducing the incidence of spinal cord injury.

As mentioned, surveillance should identify clusters. In 1988, there was an apparent cluster of diving-related spinal cord injuries in Wisconsin that was thought to be related to the existing drought conditions and low water levels in lakes.(6) Our spinal cord injury surveillance efforts led to an investigation of this cluster.

Another apparent cluster of spinal cord injuries, identified through surveillance, occurred in Louisiana last fall, when four high school athletes sustained football-related spinal cord injuries. This is a dramatic increase in this type of injury. These injuries appeared to result from “spearing.” Spearing, which is head-first contact, is illegal in high school and college football. An investigation of this cluster has led to the development of a prevention program targeted at educating coaches and officials about the dangers of spearing.

Usual data sources for injury surveillance, such as hospital discharge or health interview surveys are not adequate for spinal cord injury surveillance. Historically, data to describe spinal cord injury have been obtained from hospitals treating persons with spinal cord injury and State-based registries of persons with spinal cord injury. There are however, limitations in these sources.

Spinal cord injury data have been collected by hospitals serving persons su5tainng spinal cord injury. These data have been used to characterize spinal cord injury in the population. Problems exist when surveillance teams attempt to use only data on persons presenting for treatment to one hospital or one group of hospitals, such as the Model Systems.(7) These data may not be representative of all persons sustaining spinal cord injury in the population. We have no information on those persons not presenting for treatment. These persons may differ from those presenting for treatment. Although these data ma be valuable in assessing the quality of care, they are less valuable for surveillance purposes. Many case series reports of spinal cord injury appear in the literature. In addition to not knowing about cases omitted from the series, we often don’t know how cases were identified and then included in the study. Comparing data across studies is often impossible.

State-based programs that provide services for persons with spinal cord injury often maintain registries. These State-based registries are usually developed to aid in the planning or provision of rehabilitation, social, or family services. These registries by themselves are not surveillance systems because they are not linked to public health practice, and their data are not routinely analyzed and disseminated. By completing the link between data collection, analysis, and dissemination for public health programs, these registries become a valuable source of data for public health surveillance.

There are some limitations in using these State-based registries for surveillance. Cases are sometimes missing, only limited information about the etiology of injury is usually available, and varying inclusion criteria are used. Data are also collected in different formats.

These variations in sources of spinal cord injury data illustrate an important limitation of surveillance data in general. Because surveillance data are usually collected voluntarily from many reporters and report sources, we typically have less control over collection and only a minimal amount of data is collected.(8) This lack of detail limits the usefulness of the data, In addition, cases may be missing or inaccurately diagnosed, or information may not be complete. Because surveillance data are limited in detail and may be incomplete, they cannot be used to assess the quality of care an individual receives, and they cannot be used to determine whether a treatment was effective. Public health surveillance teams usually do not collect enough data to answer these very specific questions.(8) Because of the lack of detail and potential incompleteness of surveillance data, we need to limit our use of these data to those projects we’ve already described.

Despite these limitations, however, surveillance data are essential for our basic public health mission. Surveillance data should drive public health programs. Better definition of the magnitude of the problem can help in the allocation of medical resources and provide the necessary information to determine what services are needed. Defining the magnitude of the problem may also help in the allocation of resources for research of spinal cord injury.

As I mentioned, surveillance stimulates epidemiologic research. Surveillance identities cases. Cases identified through surveillance can be the source of cases for more focused research addressing very specific issues, such as secondary complications in persons with spinal cord injury.(8) For example, spinal cord injury surveillance might identify persons who have been treated in Model Systems and those treated elsewhere. A careful comparison of these two groups may define differences in both short-term and long-term outcomes, indicating the benefits of a “systems” approach to care. Specific treatment modalities may also be investigated by using cases identified through surveillance.

Let us now turn to epidemiologic research. Epidemiologic research differs from surveillance. These studies are designed to answer more specific questions and to test hypotheses. Epidemiologic studies are frequently designed to answer etiologic questions, looking more for answers in the causal chain.(8)

Epidemiologic studies may also be designed to describe a problem in great detail. An example is Dr. Jess Kraus’s study of the incidence and outcome of spinal cord injury in northern California.(9) This study carefully ascertained cases of both fatal and nonfatal spinal cord injury in 18 northern California counties. Using very rigorous methods of case ascertainment, this study provided a snapshot picture, in time, of spinal cord injury. The case ascertainment protocol was very detailed, costly, and time-consuming, requiring more resources than are available for ongoing public health surveillance.

Data collection methods for epidemiologic studies differ from those of public health surveillance as well. Data collected for epidemiologic studies are usually much more complete and are specifically designed to answer a specific research question. The amount of data collected varies, depending on what is needed to answer the question. Frequently, great deals of data are collected. Unlike surveillance, epidemiologic studies offer the investigators a great deal of control over the collection of the data and enable them to ensure high data quality. Data collection, therefore, should be complete.(8)

A major distinguishing feature between surveillance and epidemiology is that epidemiologic data collection is not ongoing. Data are usually collected for a specified period of time, depending on the question under study. This time-limited data collection may not allow us to study time trends of a health condition. The link between epidemiologic studies and public health practice is not as clear as that for surveillance.

Analysis of epidemiologic data is usually much more complex than the analysis of surveillance data.(8) Depending on the study, we must also consider whether we need data on controls in epidemiologic studies. Analysis of surveillance data is much simpler. We are not able to control for any related factors because of the lack of detail in the data. When comparisons are made for surveillance, historical surveillance data are frequently used as a source of control group information.

In summary, surveillance is the ongoing, systematic collection, analysis, and interpretation of data linked to public health programs. We are excited about our spinal cord injury surveillance efforts. The data from these efforts will help us to better define the incidence and etiology of spinal cord injury, to identify high-risk groups, and to evaluate prevention programs. These data, however, are incomplete and lack sufficient detail. Surveillance data will not be adequate to investigate many aspects of secondary complications in persons with spinal cord injury. Epidemiologic studies and perhaps other data sources will be needed to address specific research questions for secondary complications. Surveillance can identify cases, however, so that more focused studies can be undertaken.

References

1. Rothman KJ. Foreword. In: Ahlbom A, Norell S. eds. Introduction to modem epidemiology. Chestnut Hill, Massachusetts: Epidemiology Resources, Inc., 1984:i.

2. Ahlbom A, Norell S. eds. Introduction to modem epidemiology. Chestnut Hill, Massachusetts: Epidemiology Resources, incl, 1984:1.

3. Centers for Disease Control. Guidelines for evaluating surveillance systems. MMWR1988;37(S-5):1-2.

4. Centers for Disease Control. AIDS and human immunodeficiency virus infection in the United states:1988 update. MMWR 1989;38 (S-4):1-2.

5. Council of State and Territorial Epidemiologists. Position statement no. 7. Brekenridge, Colorado: Council of State and Territorial Epidemiologists. 1988.

6. Centers for Disease Control. Diving-associated spinal cord injuries during drought conditions - Wisconsin, 1988 MMWR1988;37:453-4.

7. Stover SL, Fine PR, eds. Spinal cord injury—the facts and figures. Birmingham: The University of Alabama at Birmingham, 1986.

8. Thacker SB, Berkelman RL. Public health surveillance in the United States. Epidemiol Rev 1988; 10:1 M-90.

9. Kraus JF, Franti CF, Riggins RS, Richards F), Bochoni NO. Incidence of traumatic spinal cord lesions. J Chron Dis 1975;28:471-92.

Functional Expectation in Spinal Cord Injury

William Donovan, M.D., Vice President for Medical Affairs
The Institute for Rehabilitation and Research, Houston, Texas

We’ve been talking about the epidemiologic aspects of investigating the complications of spinal cord injury or secondary disabilities. Now, my charge is to acquaint you with what some of those secondary disabilities and complications are. I feel also that my charge is to acquaint you with some of the expectations for rehabilitation and to point out how these secondary complications can sidetrack or derail these functional expectations.  

The spinal cord is divided into segments -- Cervical Segments 1-8, Thoracic segments1-12, Lumbar segments I-5, and Sacral segments 1-5. (Reference - Structure of the Spinal Cord. Adapted from: Haymaker W. Bing’s Local Diagnosis in Neurological Diseases. 14th ed. St. Louis: DV Mosby, 1956.)

The lower cervical segments contain the nerves that control the upper extremities. The upper cervical segments control the diaphragm, a muscle below the ribs that is primarily responsible for breathing. When the upper cervical segments of the spinal cord are injured, then serious consideration must be given to maintaining ventilatory or breathing support for the rest of the individual’s life. 

Moving into the thoracic segments of the spinal cord, the thoracic muscles and abdominal muscles and corresponding skin are involved. In the lumbar and upper sacral spinal cord lies the control of the lower extremities; the sacral segments control bowel, bladder, sexual function, and also sensory innervations in the area of the seating surface, which is a critical consideration in preventing complications of the skin. 

In 1981, John Young and colleagues studied and enumerated the occurrence of complications related to spinal cord injury between 1973-1981. (Young JS, Burns PE, Bowen AM, McCutchen R. Spinal cord injury statistics: experience of the regional spinal cord injury systems. Phoenix, Arizona: Good Samaritan Medical Center, 1982.)  Young had 739 paraplegic and 876 quadriplegic cases in his data base. He noted the number of times complications occurred with each one of the major organ systems during the initial medical rehabilitation period. Among the leading complication were urinary dysfunction, vascular/skin problems, spasms, and pulmonary problems. Complications of the genitourinary system loom so large, because infection is a common complication.

In that same publication, Young also described the incidence of selected medical complications in hospitalized patients. He reported that about 65% of the patients had complications of the urinary tract during the years following injury. Spasms or spasticity occurred in about 19%, pulmonary complications in about 131, and pressure sores in 23%. Other complications were less frequent. There is one point I’d like to make about pressure sores. Decubiti are a very serious and very costly complication. When they occur, it is generally because of ignorance or neglect. And it means that somewhere along the line, the prevention messages and the knowledge that were supposed to have been imparted to an individual during the rehabilitation process were never delivered, never learned, or never used. 

Looking at the spinal cord from the point of view of functional expectations, we see that in the lower region of the spinal cord (i.e., below S1), injuries do not cause much disability with respect to the musculoskeletal system. These individuals are generally able to walk with minimal assistance. They may have some weakness in the hip extensors and plantar flexors, but they are quite functional from a musculoskeletal standpoint. They still have problems with regard to bowel, bladder, and sexual function.

Complications of the skin are extremely important, as I indicated, and they can occur in patients at just about any level. Complications of the urinary tract can also occur at any level, but the complications of the urinary tract at this particular level are generally related to the bladder’s inability to contract. It is flaccid and easily over-distended, and complications can arise from that. Because there are generally no reflexes, straining and Crede’s maneuver are important in trying to effect evacuation and elimination. 

With regard to complications of the urinary tract, Young also developed a table for us which outlined specifically which urinary tract complications were reported e.g calculus kidney/ureter, urinary tract infections, bladder calculus, orchitis and epidedymitis, infection of kidney diabetes, cystitis, disease of ureter. Urinary tract infections are by far and away the greatest of all of these complications. Young counted just those urinary tract infections that were reported. In most cases, that means they were not reported unless the individual was sick. If they had recorded the occurrence of bacteriuria or colonization of the urinary tract (that is, invasion of the urinary tract with bacteria, even though the patient may not have been symptomatic), then probably all of the patients would have been affected. This is a significant issue that must be addressed regarding prevention of urinary tract deterioration in patients with spinal cord injury. 

Ascending the neuraxis (the spinal cord) and considering the next group of injuries, the levels from L4 to S1 can be grouped. In this group, the area that controls bowel, bladder, and sexual function falls below the area of injury. The preservation of reflex emptying of the bladder, though not guaranteed, is likely, as opposed to the former group of patients, whose reflex emptying of the bowel and bladder is abolished. Management focuses on utilization of reflexes to help with elimination. Sometimes the reflexes get in the way and have to be blunted by the use of anticholinergics, and sometimes not. 

These patients still, however, have difficulty with management of bowel and bladder. And because they have the return of sacral reflexes, they often develop a condition which plagues the entire population of individuals with spinal cord injury above the sacral segments —detrusor sphincter dyssynergy. In this condition, instead of working opposite, with the sphincter muscles relaxing while the bladder muscle contracts, they contract at the same time. Complications related to that can occur, particularly if the contraction is sustained for a long time. In this condition, when the bladder contracts, the urine gets down to the point right at the membranous urethra, and the external urethral sphincter within the pelvic floor contracts and shuts off the stream of urine. That can result in the maintenance of a high pressure in the bladder for prolonged periods of time, which can cause complications like hydronephrosis, reflux, and infection of the kidney, which is very serious. 

When it comes to functional mobility, though, these individuals also are quite independent. Because the lesion is low, some of the muscles in the lower extremities do work and can be supplemented by braces or ankle/foot orthoses (AFO), two canes, or crutches. These individuals will be able to walk around with the assistance of these devices. Although they will be unable to stand for prolonged periods, they will not require a wheelchair. 

Moving a bit higher and considering L1 to L3, these patients have even more of a loss of function of leg muscles and loss of sensation in the leg. These individuals will not have the preservation of muscle function as did the group just considered. And even though they will be able to walk with the assistance of knee/ankle/foot orthoses (KAFOs) and crutches for a short distance, a wheelchair is usually also required. Bowel and bladder management for this group generally is the same as for the previous group. 

Patients in the T7 to T12 group usually are able to assume the erect position with enough support. That support will include KAFOs and crutches, but it will not be a functional activity. That is, it will be useful for exercise but not a substitute for the wheelchair. Balance is not sufficient, and their speed of ambulation is not functional. But in a wheelchair, these individuals are perfectly functional with respect to all activities of daily and independent living. They are capable of advanced wheelchair skills, such as popping wheelies and riding up curbs, down to the floor, and back up again. Their bowel and bladder management also relies upon the use of reflexes to effect emptying. They can certainly participate in activities outside the home, such as athletics, and in the work-a-day world. 

Patients with injuries in the TI to T6 area have absolutely normal function of the upper extremities. Because these patients are paraplegics, their upper extremities have not been affected at all. Activities of daily living, such as dressing, eating, bathing, hygiene, and transfers will all be independent. Of course, these expectations are for the “average” otherwise healthy individual who happens to have an injury in this area. If an individual is remarkably obese or has severe pulmonary disease, of course these expectations must be modified. 

These patients may need some devices, such as a foot loop, to help with transfers or positioning~, but by and large they will be independent if their spasticity is not too severe and is manageable. They will be independent wherever they go and can participate in work and leisure activities. Their bowel and bladder management is essentially the same as mentioned earlier. 

When the spinal cord is damaged in the cervical region, the condition is referred to as quadriplegia. I think it’s fair to consider those with C7 and C8 together, but C6 and C5 injuries must be considered independently. In this C7 to C8 group, pulmonary complications are more of a concern. This is where these complications begin to loom ominously because the individuals with impairments or lesions at this level have lost the ability to cough. As you work your way up the neuraxis, the higher you go, the greater the loss of control of truncal balance. And the loss of the effectiveness of the ability to cough also grows gradually greater. 

At the C8 level, there is no innervation of any of the intercostal musculature at all. So the cough is indeed quite ineffective. The respiratory muscles are not innervated, but breathing is accomplished through the diaphragm, which is still innervated from the C3 and C4 area. However, the diaphragm is a muscle of inspiration, not expiration, so it gets air in but air gets out just on the basis on natural recoil of the lung and the thoracic wall. These patients cannot forcefully exhale, as in exercising or particularly in coughing. Because of that decreased ability to cough, they are vulnerable to complications such as atelectasis of entire segments of their lungs. This can be cleared with some vigorous chest physiotherapy and assisted coughing. 

Young detailed the incidence of respiratory complications, and categorized them. Complications such as atelectasis and pneumonia are relatively common, particularly in the quadriplegic population. Phlebitis, also fairly common, occurred in about 15% of patients in both groups. With respect to ambulation and activities of daily living, these patients should generally be independent because there is enough preservation of movement in the upper extremities. C7 patients will have triceps function and, therefore, will be able to assist with their shifting of body weight and transfers; and those with C8 injuries will even have some dexterity in the movement of their hands. They will also be independent in a wheelchair, but more advanced skills, such as the ones discussed earlier, will be difficult. And as far as bladder management, intermittent catheterization, which is a useful means of management for people with paraplegia, becomes a bit difficult for people with lesions at C7 because of the loss of finger dexterity. 

These patients will generally be using orthoses that apply to the upper extremity, and they may use a short opponens. Sometimes an MP Stop will be used for individuals with CS lesions. But, in my experience, many times people just reject these devices at these levels; although some who have a higher gadget tolerance do accept them. 

C6 should be considered as a single level because it is a pivotal region. People with injuries above this level always need so much assistance that they cannot live alone. Individuals with injuries below this level may be able to live alone, although it may not be practical in many instances. At this level, only the very exceptional patients will be able to do so; most will not. They will be partially independent; they will need some assistance. They will often use a reciprocal orthosis, or wrist-driven flexor hinge splint. They will be able to drive a van, but driving a car is only for the very exceptional. And they will have partial independence in the wheelchair. They may need modified hand rims. A power wheelchair is also necessary. At this particular level, two wheelchairs are indicated and are justified. 

There are many reciprocal orthoses for these patients. They depend upon the translation of the dorsiflexion of the hand to close the fingers and the thumb to each other. For those individuals who have not clearly decided whether they would use such an orthosis or who have not even considered this particular aspect of their rehabilitation, mock-up devices can enhance function. If the individual accepts these devices, which are very cheap and easy to make, then the more expensive ones can be prescribed. 

Regarding bladder management, it will be difficult to do intermittent catheterization. For males, procedures to try to achieve voiding at acceptable pressures into external collecting devices are more strongly considered; some males and females may have to accept an indwelling Foley catheter. 

Moving to C5 lesion patients, powered wheelchairs are certainly indicated. Individuals at this level will be partially dependent, but they will be able to do many’ things for themselves as well. Although they will not be able to live alone, some will he able to drive; it depends entirely on just how much shoulder motion and control is present. The orthoses they use are generally fixed-wrist orthoses, or a battery-powered type of orthosis to provide the same type of prehension that the wrist-driven flexor hinge splint does. Intermittent catheterization is not possible, and the indwelling catheter is more often employed. 

For patients with lesions above C5, ventilation must be considered. Ventilation must be provided for patients with Cl and C2 lesions, and for some with C3 lesions. Generally, two portable ventilators are needed, one for the wheelchair and one for the bedside. And the individual can be mobile with the ventilator behind the chair or underneath the chair, along with a battery. There are other options open for this group, such as phrenic nerve stimulators, pneumobelts, and so forth. Bowel and bladder management is essentially the same as with C5 patients. Ambulation is by powered wheelchair, usually with chin control. Some will use sip-and-puff controls; other mechanisms are available. Some people will benefit from mobile arm supports if they have enough shoulder motion left to be able to utilize a mobile arm support. Often, environmental control systems are needed as well, particularly if one is living in a shared, attendant living situation. 

Bear in mind that this discussion has been about expectations based upon individuals with complete spinal cord injury. Nowadays, of course, thanks to improvement in rescue and retrieval and better initial management to prevent such complications as hypotension and hypoxia, we are seeing a higher incidence of incomplete lesions. Some of these incomplete lesion patients will show some recovery, maybe not to the point where they’re perfectly normal, but to the point that they may be able to walk. We don’t need to have 100% of restoration of function, or function of the fibers within the spinal cord, to be able to walk. 

Finally, I’m going to conclude by discussing a collaborative study done in Australia by Ed Carter, John Young, Sir George Bedbrook, and, me in which we looked at the incidence of complications of spinal cord injury—those complications or secondary disabilities which would impair reaching the anticipated goals.(2) 

We looked at patient management in Australia, where treatment is all done in one place, the capture rate is 100%, and all patients are treated comprehensively, along the lines generally accepted for individuals with spinal cord injury. We compared them against what could be considered a nonsystem protocol. Those patients were managed acutely outside the model systems and entered the model system between days 1 and 15, days 16 and 30, days 31 and 45, or days 46 and 60. We looked at what complications they had when they came into the system. (They developed a few complications within the system, too, but we did not consider those complications.) 

We considered the effect of delay (in referring the patient to a spinal cord center) on the incidence of these complications. With urinary tract infection, if patients enter a center early, the incidence is low, but the incidence increases substantially as the delay increases. The incidence of decubitus ulcers also increases, and this incidence grows larger as the patient delays entering a model system of care. Other complications generally follow the same trend. 

In contrast, for those individuals admitted to the Royal Perth Rehabilitation Hospital on the first day of their injury, as most spinal injured persons are, we looked at the complications that developed while they remained in that hospital over the same time frame. Urinary tract infections do occur—maybe it’s just a complication that even under the best of circumstances cannot be prevented —but the incidence is lower. Decubitus ulcers are, however, prevented, and respiratory complications are minimized. 

References

1. Young JS, Burns FE, Bowen AM, McCutchen R. Spinal cord injury statistics: experience of the regional spinal cord injury systems. Phoenix, Arizona: Good Samaritan Medical Center,1982.

2. Donovan WH, Carter RE, Bedbrook GM, Young JS, Griffiths ER. Incidence of medical complications in spinal cord injury: patients in specialized, compared with non-specialized centers. Paraplegia I984;22:282-90.

Injury Interventions in Public Health Practice

M. Patricia West, M.S.W. and Richard Hoffman, M.D.
Colorado Department of Health, Denver, Colorado. 

Ms. West: The fact that this colloquium is being hosted by the CDC deserves some review of history. As earlier speakers have pointed out, the application of scientific study to the field of injury prevention over the past 15 years has produced a foundation of knowledge. We now understand that injuries are predictable and, therefore, preventable. But society’s attitudes have not changed. Most people regard injuries as accidents—acts of God or fate which just happen; they are not predictable or preventable. This perspective is the result of looking at a single event or anecdote instead of all the events in a population. Part of the role of public health is to communicate risk effectively —to expand the view of the total population, to move people from basing their choices or behaviors on their own anecdotes to a larger picture. 

My job here is to talk about injury interventions in public health. I view the public health role in injury prevention in Colorado as the translation of research findings into action at the community level. 

There are five components, and the first is studying the numbers, very basically. This is the “who, what, why, when, how, and where” of the problem. We conducted a baseline study on injury in Colorado.1 Injury deaths and injury hospitalizations by E-coded cause are given for about 2,100 deaths and 14,000 injury hospitalizations from July 1986 through June 1987. For those of you who know much about data on the things that kill us from injuries, you know that about 50% of unintentional injury fatalities are caused by the automobile, another 50% by other unintentional injuries. There is another group of fatalities caused by intentional injuries, such as suicide and homicide. 

With nonfatal injury hospitalizations, unintentional injuries are responsible for 60% of the hospitalizations, intentional injuries account for 20%, and motor vehicle crashes account for only 18% —pointing out that the things that kill us are not necessarily the things that hospitalize us. Death rates are compared with hospitalization rates by leading causes, for 100,000 persons in Colorado for the same period of time July 1986 through June 1987) for the age group 15 to 24 years. It shows that, as you look at this specific age group, the 15- to 24-year-olds, there is a vast difference between the death rates by leading cause and the hospitalization rates for these same leading causes, If you look at the leading causes of death for this age group, motor vehicles are first, suicides are second, and assaults are third. The leading cause of hospitalizations is actually suicide attempts; second is motor vehicle occupant injuries. In designing prevention strategies, it is important to understand two points. First, injury deaths are relatively rare events. For every death in Colorado, there are 16 injury hospitalizations. Second, for nonfatal injuries, the leading cause in the 15- to 24-year-old age group is suicide attempts. 

First we look at the data; and second we try to determine how to control the problem using both primary and secondary interventions. Third, we create a plan based on that data. The fourth step is finding, developing, and/or training people who can implement that plan at a community level in a pilot project. The fifth step is to actually evaluate, modify, and disseminate that information on injury to others. 

I’d like to introduce Dr. Richard Hoffman, the State Epidemiologist in Colorado, who is going to describe examples of current injury surveillance data and what we have been doing with these data in Colorado. 

Dr. Hoffman: Why is the State health department involved in injury control? What can the health department offer or bring to the injury prevention table—a table that is already crowded with support groups, rehabilitation experts, research scientists and safety and traffic regulators? 

I am attending this meeting to find out how to make the State health department relevant and how to use its resources to serve its constituents best. This is what a State health department and its epidemiologists usually do:

• Measure the amount of disease in a community and report this to the community.
• Prevent disease by offering services in response to case reports.
• Control epidemics by using knowledge of disease epidemiology to interrupt transmission.
• Disseminate educational materials to targeted audiences.

What the health department does not usually do is:

• Regulate or enforce seatbelt use.
• Enforce driving under the influence laws.
• Perform long-term research or follow-up studies.

With these State health department roles in mind, is that agency equipped to prevent primary and secondary disabilities? Are we using the best conceptual framework to prevent spinal cord injuries? What are the elements of an infrastructure that the health department can use to effect disability prevention? I think there are four primary elements that make a health department a legitimate actor in injury control: 

• A legal basis for surveillance and intervention.
• Stable funding, generally using some local general tax-revenue sources.
• Trained personnel in adequate numbers.
• A data-base intervention, often including responses to individual case reports.

What resources are needed to carry out epidemiologic surveillance? The communicable disease model is helpful in determining those resources. Each year, several thousand cases of communicable disease are reported to the State health department. Each patient is reported by name, age, sex, address, and date of onset. To compile and maintain this data base requires about one full-time equivalent (FTE) employee; however, to interview each patient and investigate each case and obtain medical information, a work history, and an exposure history would require several more employees. And this would not include the different response, disease control, or intervention arms of the State or local health departments. We respond to individual cases of communicable diseases, such as HIV (human immunodeficiency virus) infection, with partner notification, and to certain occupational diseases, such as asthma, with on-site industrial hygiene evaluations. But for individual reports of traumatic brain injury or disabilities secondary to spinal cord injury, there is not vet a well-defined public health response. 

Performing such an investigation is labor-intensive. One FTE employee can handle somewhere between 10 and a few hundred cases per year, but not thousands. As for long-term, repeated follow-up of investigated cases—such as would be needed to study secondary disabilities of spinal cord injured persons—even more resources would be needed. For most communicable diseases, there is a longstanding infrastructure involving Federal, State, and local health agencies, as well as infection control practitioners and school nurses. I think different institutions and agencies may be needed for injury control and disability prevention. 

In Colorado, the Board of Health has examined our statute regarding the detection, monitoring, and prevention of environmental and chronic diseases and has decided that certain injuries fit the statutory definition of “chronic disease.” Spinal cord injuries meet that definition, and so the board has made spinal cord injury a mandatory reportable condition. This allows named reporting of cases without first obtaining a patient’s consent. This permits better recognition of the complete spectrum of spinal cord injury and the magnitude of the problem. However, rarely does the health department have the resources to conduct follow-up surveillance of persons with spinal cord injury to determine the rates of secondary disabilities. For this type of study, the health agency must obtain consent from the patient to turn his or her name over to another research group. 

In Colorado, we are developing ways of responding to individual case reports. That is important because the legislature and the board of health do not believe it is necessary to collect names unless there is a response to each reported case. If our goal is to develop an epidemiologic/surveillance-based infrastructure for intervention, then we need to make the case for such with the legislature. 

Since 1986, we have had a Spinal Cord Injury Early Notification System, which provides information to each injured person on issues such as funding and entitlement programs, social services, post acute care options, the rehabilitation process, the phenomenon of spinal cord injuries, and local support programs. We are developing a program to prevent secondary disabilities using public health nurses in Colorado Springs. These activities are supported by Federal funds, and I hope that they help generate State and local support for injury prevention. 

How else can we use surveillance data to prevent disease? The usual injury prevention schemes call for environmental or design modifications, legislative change, or behavior modification. I think surveillance data can contribute to those schemes in several ways. Generally, surveillance data (i.e., reported cases) represent numerators. The population at risk (denominator) must be added to the equation to calculate a rate and make the best scientific decision. The denominator maybe the total population or it may be selected subgroups. Surveillance data may be useful in the following ways: 

• Evaluating interventions by measuring disease occurrence before and after intervention.

• Generating ideas for interventions. In this sense, I believe the health department will he most successful when it identifies small clusters of injuries, such as diving-related spinal cord injuries, rather than taking on large causes of injuries, such as motor-vehicle crashes, which already have many persons and agencies working on them.

• Identifying persons for case-control studies designed to measure the risk of developing disease or to measure risk factors.

• Identifying injured persons or subgroups for long-term follow-up studies, such as would be required to determine the epidemiology of secondary disabilities. 

Surveillance data might also be useful to help correlate the availability of health care services to persons with spinal cord injuries and the rates of secondary disabilities or to design studies comparing health care outcomes in various hospitals. 

In summary, it is not totally clear what the public health department intervention program for spinal cord injury should look like or how the optimal infrastructure should be constructed. I hope this colloquium will provide ideas so that our injury prevention programs will be community/constituency- driven, will be relevant and useful, and will be more than simply the communicable disease control model repainted with injury control colors. With the CDC grant for disabilities prevention, we have been given a few years to develop a program. We want to make our program useful to enough people in Colorado so that there will result a constituency that can influence State legislators to put in place the infrastructure for a long-term public health program to prevent spinal cord injury. 

Ms. West: One of the things we’re trying to communicate to you is that part of the responsibility for injury intervention in public health is marketing. Now that might sound a little strange to you, but there’s an old adage that says, “You cannot sell what you do not have,” and for many parts of injury prevention, we lack knowledge about an effective intervention. “But,” the adage continues, “you’ll never sell what others don’t want.” Injury prevention sometimes means, at best, selling ideas to people who don’t know they need a product, such as seatbelts. At worst, it may mean they don’t want the product, and a good example of that is motorcycle helmets. In Colorado, we had a very bloody battle about that last year, and we lost roundly. The legislators said, “Don’t come back this year.” And we won’t, until we have a better, more effective coalition at the community level. 

Injury prevention involves marketing. We have to understand better what it means to prevent injuries, to create long-term lasting change. Larry Cohen in Contra Costa County, California, has created a spectrum of prevention efforts. It’s important for us all to understand that this is a multidimensional framework. To do prevention effectively, you need to build individual knowledge; promote community education; educate, in our case, health care providers; foster coalitions and networks; change organizational practices; and influence policy and legislation. And if you’re only doing one of those, the change won’t last long. To summarize what he’s saving, effective prevention includes both education of individuals and communities; it includes technological and engineering changes; and it includes policy and regulatory changes.

We used an adaptation of a community-wide prevention planning tool created by David Altman at the Stanford Health Promotion Resource Center. If you’re doing a community-wide program, you will have persistent change in only about 20% of your target population. If you were trying to get seatbelt use in 80% of your population, you would fight long and hard to accomplish that, and it’s probably an unrealistic short-term goal. This concept, called attenuation, described by Elizabeth McLaughlin and her colleagues in burn prevention work in Massachusetts, is an important one that we all need to understand when we’re talking about community injury prevention. 

But that brings us to the concept that no one discipline owns this field of injury prevention, and Dr. Hoffman related this to you very dearly when he was talking about all of the different groups out there that have been involved in injury prevention for a long time. This includes groups like the National Safety Council, the Red Cross, and many staffs of your rehabilitation centers, which for many years have recognized that there was a lot to be done in the field of prevention. Public health, in many ways, is the new kid on the block. 

As that new kid, public health must respect the history of commitment and expertise of those who have come to the podium before us. Additionally, we must be sensitive to advocating our emphasis on primary prevention. It is only part of a larger program of disability prevention. Sometimes, however, injury prevention programs or safety programs that have been in place nationally are based on sound ideas but are not necessarily based on local surveillance or data analysis or any knowledge of whether the program accomplished a measurable decrease in the targeted injuries. Public health brings a scientific base of data and evaluation to the field of injury prevention.

Lastly, I want to talk about projects that had been particularly effective and successful, and those which haven’t shown results. Sylvia Michik, in her North County Health Services Program in California, has done a good job of relating to us the importance of targeting. And as she said, the successful programs have been careful to target their efforts; they have dealt with specific injury types, such as motor vehicle passenger injuries, in a specific population, using a specific intervention, and specific strategies implemented by very particular individuals or agencies. In a paper that she presented in 1988, she defined examples of successful programs based on these principles of targeting, such as a 30% decrease in motorcycle deaths by requiring the use of helmets through legislation. A 30% decrease: that’s pretty monumental.

There has been an 80% reduction in aspirin deaths in children under the age of 4 through the use of child-resistant packaging. Infant strangulation deaths have been reduced by changing the spacing between crib slats. Those were programs that were finely targeted and for which we could measure the results and evaluate their effectiveness. 

Examples of unsuccessful programs are the “Don’t drink and drive” and “Just say no” public service campaigns. These are targeted messages, but they have an untargeted audience; they’re supposed to be affecting the total population. We know that you don’t affect the total population with one message. Other examples, such as, the “Lock up your poisons” and “Supervise your children in the kitchen” campaigns, are messages that have consumed substantial numbers of very scarce resources and were unsuccessful. A final example is poison prevention education programs that target school-age children. When we look at the data, we find that 80% of poisoning injuries occur to children under 4 years of age. So when you’re putting those dollars into school-age children, you’ve missed your target population.

In conclusion, the most elegant research is worth much less without a mechanism to translate those scientific findings into targeted action. One function of public health is to make the connection between those studying the problem and U.S. communities that are poised to implement programs.

Our goal is to prevent injuries, but it requires shifting societal attitudes from the concept of accident to the concept of injury; from an act of God, to an understandable, predictable, and therefore preventable event. To accomplish this very broad, untargeted goal requires access to good surveillance data and targeted, focused action by many diverse groups, such as this audience. 

Reference

1. Colorado Department of Health. Injury in Colorado, Baseline Analysis, 1989. Denver: Colorado Department of Health, 1989. 

Setting the Conceptual Landscape

Marcus J. Fuhrer, Ph.D., Professor, Department of Rehabilitation, Baylor College of Medicine and Vice President for Research, The Institute for Rehabilitation and Research, Houston, Texas. 

This is an extraordinary meeting—one reason being the extraordinary diversity of the perspectives being brought to bear on the subject of secondary conditions of persons with spinal cord injury. I feel a great sense of responsibility, therefore, in attempting to provide some notions that will be of assistance to you as you participate in your workgroups. In this presentation, I propose to sharpen our focus on the charges given us; suggest some terminology that will help us in communicating with one another; and propose three interrelated perspectives for thinking about the secondary conditions, or what I’ll recommend later we term, the secondary impairments, of spinal cord injury. 

Terminology - As I indicated at the onset, our collective strength is the variety of backgrounds that we represent. A hazard of that diversity, however, is that we will use key words differently and, thus, will have difficulties in communicating. So bear with me as I discuss the matter of terminology. 

The preparatory material for this colloquium states that the purpose is to assess the state of the art in the development of strategies, interventions, and methodologies to prevent secondary disabilities in people with spinal cord injury. Other pieces of orienting material use the terms complications, health complications, secondary complications, or secondary disabilities of spinal cord injuries. It’s useful to examine each of those terms. 

According to half-dozen or so medical dictionaries, the common meaning of complication is a pathological condition that appears in the course of another pathological condition and may or may not be the result of that condition. For our purposes, the condition that has already been diagnosed is, of course, spinal cord injury. As an aside, we might note that this definition allows us to consider spinal cord injury as a complication of some other diagnosed condition, such as alcoholism; but that’s the subject for another colloquium. It’s important to note that the definition of complication is explicitly unrestrictive regarding whether the newly emergent disorder is causally related to the primary condition. Therefore, from that standpoint, an acute hearing loss is no less a complication of spinal cord injury than is autonomic dysreflexia. 

Given the definition of complication, it is both redundant and potentially confusing to use the combined terms secondary complications or health complications, so I suggest that we expunge them from our vocabulary. In an influential article, Michael Marge has used another term, secondary disability.’ Its definition is very similar to that of complication, but the qualification is added that the secondary pathological condition is to be chronic, that is, of long duration. So now we have two major options: first, whether to consider only those secondary conditions that are chronic and second, whether to consider all secondary conditions, including those unrelated causally to the spinal cord injury. 

My recommendations are that we devote our attention predominantly to secondary conditions whose causation is at least partially attributable to the spinal cord injury itself but that we do not wholly neglect those secondary conditions that seem to be causally independent of the injury. Even for a secondary condition to which cord injury does not make a causal contribution, the disabling and handicapping consequences of the injury may alter the secondary condition’s manifestations and its response to treatment. I suggest, too, that we emphasize secondary conditions that are chronic, but not wholly neglect acute, potentially reversible conditions, because they can also have devastating consequences in the lives of the people we’re considering. 

I will use the term secondary impairment to focus our deliberations. By that term I simply mean any loss or abnormality—anatomical, physiological, or psychological—that occurs in an individual with preexisting impairments. For our purposes, the latter are due to spinal cord injury. 

Three Perspectives on Secondary Impairments -I want to illuminate the subject of the secondary impairments of spinal cord injury from three different perspectives. My hope is that this triad of perspectives will be helpful as you consider the specific impairments that constitute the focus of your workgroups. 

The three perspectives are the principal characteristics of secondary impairments, the interventions aimed at preventing secondary impairments, and the service-delivery implications of preventing secondary impairments. 

What follows is not an exercise in making all possible distinctions, but rather in providing a conceptual structure for understanding the nature of any secondary impairment. The effectiveness of the preventive measures we choose depends a great deal on the soundness of that understanding. This paradigm is indebted to the work of Saad Nagi, Phillip Wood, and their collaborators. (2)(3) For those of you who have been closely following their conceptual contributions, I shall only point out that I’m borrowing the principal constructs that the two share. I’m not endorsing many of the elaborations that have arisen—for example, the hardly workable International Classification of Impairments, Disabilities, and Handicaps.4 I do recommend that we use the terminology, the verbal labels, that Phillip Wood uses because of that terminology’s increasingly widespread usage in the literature. 

First, I want to familiarize you with how spinal cord injury itself is understood according to this paradigm (Figure 1). The active pathology of spinal cord injury takes the form of disruption of the structural and functional integrity of the spinal cord, which is caused by trauma of some sort. Assuming the person survives, he or she may be left with impairments that take the form, for example, of paralysis, loss of sensation, or disruption of autonomic functioning. 

Those impairments are likely to result in disability, reflected by difficulties in performing basic activities of living, such as getting out of bed, feeding oneself, dressing, or ambulating. In turn, disability may result in handicap, which refers to limitations in performing roles in society, such as working, pursuing an education, or parenting. 

I believe there is a consequence of impairments, disabilities, and handicaps that needs to be added to the Nagi-Wood system; it is the diminution of subjective well-being, exemplified by a poorer self-assessed quality of life, by less optimism regarding the future, or by less expressed satisfaction with living. Lastly, the degree to which impairment produces disability, disability produces handicap, and either of them produces diminished subjective well-being is certainly influenced strongly by a host of moderating factors such as the person’s social support, access to services, or stage of life. 

Secondary impairment begins with the occurrence of active pathology, which may have a variety of etiologies, including trauma, a biochemical imbalance, or an infectious agent. The pathology has a natural history, which, as Melvin and Nagi point out, includes efforts of the organism to restore normality.(5) Potentially important features of that natural history include the pathology’s rate of progression and its amenability to therapeutic intervention. If the pathology does not remit spontaneously or is not reversed by some therapeutic intervention or if the individual survives the pathology, a secondary impairment may result. 

Several features of secondary impairments should be understood. First, note that although every pathological condition is associated with an impairment, some impairments are independent of pathology. The latter include residual abnormalities that continue after the pathological condition has been controlled or eliminated. An example is the amputation of a limb following a severe burn. Another feature of secondary impairments is that different pathological conditions may result in the same impairment. Limb weakness, for example, may result from primary muscle disease, nerve damage, or both. 

The characteristics of secondary impairments are describable in at least three important ways: objectively, subjectively, and in terms of their natural history, in particular, their reversibility. 

Objectively, secondary impairments can be described in terms of their structure at the gross anatomical, cellular, or subcellular level; by the biochemical mechanisms involved; or by the pathophysiological and compensatory physiological processes that occur. These manifestations constitute the pathological signs to which the clinician responds. Secondary impairments can also be described objectively in epidemiologic terms (for example, with regard to their population incidence, prevalence and geographic distribution). 

Some secondary impairments may also be described phenomenologically (i.e., as experienced by the person to whom they are happening). Clinically, that refers to the symptoms of the impairments. 

The possible consequences of secondary impairments are disability, handicap, and diminished subjective well-being. Some secondary impairments—not all—may result in disability, which is a restriction of the person’s ability to perform an activity in a manner considered normal for him or her (for example, the activities of everyday life that include getting out of bed, toileting, dressing and feeding oneself, and writing). 

Disabilities have four features of particular note. First, in considering the relationship between secondary impairments and disabilities, it should be noted that not all secondary impairments lead to disabilities: for example, when the severity of the impairment is not very great. Second, different secondary impairments may result in the same disability. For instance, the disability of having difficulty climbing stairs~ may result from muscular weakness or from an equilibrium disturbance. Third, a frequent consequence of disability is dependence on others to perform common activities of daily living. Thus emerge some of the social costs of disability. And fourth, identical impairments in different people may result in different degrees of disability —hence the importance of moderating variables such as people’s preexisting health or age. 

Before moving on, an additional comment on terminology is warranted. Because of the specific meaning assigned to the term disability in this conceptual system, the combined term secondary disability should not be casually interchanged with the term complication. 

Some disabilities may lead to handicap, when handicaps are understood to mean limitations in the person’s fulfillment of the social roles expected for persons of his or her particular age, gender, and sociocultural milieu. The roles include those relevant to family, work, and school. For example, a paraplegic who has been a job holder for years may lapse into unemployment (a handicap) after a cerebral embolism (the pathology) results in upper limb weakness (a secondary impairment), which hampers that person’s wheelchair mobility (a disability). Active pathology, impairment, disabilities, and handicaps may well have the consequence of diminishing the individual’s sense of subjective well-being. Here we consider the interior person and his or her decreased satisfaction with living, lower self-assessed quality of life, diminished sense of control over life events, and reduced optimism regarding the future. Again, this set of consequences is in addition to the preceding ones identified by Wood and Nagi, and I think it is an important set. 

The last component to be discussed in this paradigm of secondary disability is moderating factors. Their importance cannot be overemphasized. Formally considered, a moderating factor is a variable whose level determines the direction or degree of relationship between two other variables. For example, whether or not flu virus results in a full-blown flu syndrome may depend on the person’s state of general health, in which case the state of health would be a moderating factor. 

Some of the most important moderating variables pertain to the consequences of spinal cord injury itself. The impairments, disabilities, and handicaps that exist because of the spinal cord injury are initial conditions for the active pathology that results in secondary impairments. Particularly striking in this connection are the findings of Nancy Crewe and her collaborators, who found that persons with spinal cord injury who exhibited greater handicap in terms of poorer vocational adjustment and less social involvement were less likely to be alive 10 years after injury than were persons who were better adjusted vocationally and socially.(6) Those findings raise the possibility that a handicap may moderate people’s susceptibility to particular life-threatening impairments, enhancing or diminishing the likelihood of death. 

A host of other moderating factors, not directly associated with injury, are important as well. Included are the person’s gender, life stage, adequacy of social support, and access to services. These and other moderating factors interact with the secondary impairments to produce consequences—reflected in new disability or handicap—that are different from the consequences the person would suffer if the spinal cord injury did not exist. Expressed concretely, a stroke, amputation, or limb fracture in a person with spinal cord injury is a different phenomenon from the same impairment in an able bodied person. However, we have a very poor understanding of what the differences are for most of the secondary impairments of persons with spinal cord injury. 

In considering preventive interventions for secondary impairments, we must presuppose that the best possible information is available regarding the nature of secondary impairments in order to judge accurately the timing, content, and likely outcomes of the interventions. 

The different possible goals for preventive interventions are conveyed by three relevant public health terms: primary, secondary, and tertiary prevention. Primary prevention is aimed at precluding a condition from beginning. If our efforts are successful, for example, in getting people not to dive into shallow water and injure their spinal cords, we have contributed to the primary prevention of spinal cord injury itself. Secondary prevention is aimed at identifying and treating people who are experiencing potentially reversible impairments. For example, a grade-I pressure sore that is treated quickly so lasting skin damage is avoided. Tertiary prevention is aimed at minimizing the consequences of impairments. Much of what we do to rehabilitate persons with spinal cord injury and maximize independent living skills can be labeled tertiary prevention. 

Tertiary prevention need not be targeted to impairments alone. Among the ways tertiary prevention can be accomplished at the level of handicap, for example, is to assure that severely disabled people have their personal care assistance needs met so they are able to perform roles such as being a reliable member of the work force. In other words, the social isolation, institutionalization, and demoralization that are often endpoints of the etiologic chain we’ve been tracing can potentially be prevented by intervening effectively at any of the preceding stages of the disablement process. 

For most secondary impairments, it can be assumed that the earlier we treat them, the more likely we are to halt their progression or reverse them. This puts a priority on early detection and on cost-effective means of surveillance. 

For some secondary impairments, especially those directly related to the spinal cord injury, preventing an impairment from recurring after it has occurred one or more times is particularly important. Consider, for example, the person who has experienced one or more skin breakdowns or severe urinary tract infections. Such persons are at particularly high risk for a repeat of the condition. Other things being equal, it is sometimes more cost-effective to direct our preventive efforts toward people who have suffered a secondary impairment one or more times than toward everyone who is at risk for that impairment. 

Preventive intervention may be somatically oriented; educationally, behaviorally, or counseling oriented; or environmentally oriented. Somatically oriented interventions cover the gamut of contemporary medical technology: surgical, pharmacological, and physiotherapeutic, as well as applications of rehabilitation engineering. We have available for consideration a legion of interventions that have proven successful in preventing given impairments in patients with disorders other than spinal cord injury. For example, several different medication regimens can be adapted and then used to prevent urinary tract infections that lead to kidney deterioration. The key words are adaptation and interaction. Most somatic interventions must be adapted to take into account their interaction with alterations of the person’s physiological, biological, and chemical makeup that are due to the spinal cord injury. Interactions with concurrent interventions must also be considered, especially when we bear in mind the many medications people with spinal cord injury may be taking. Again, these interactions exemplify moderating factors, in particular the influence of the concomitants of the preexisting spinal cord injury on the secondary impairment and its treatment. 

The common denominator of educationally, behaviorally, or counseling oriented interventions is that their effects are mediated by the thinking, feeling human being with spinal cord injury. At this level, our concern is often with providing the person with the information needed for prevention, with skills that translate that knowledge into effective daily practices, with the conviction that prevention can be effective, and with a sense of self-worth required to feel that all the effort is worthwhile. For some of us, those objectives are encapsulated in the goal of empowering people to take responsibility for their own lives. 

Increasingly, the challenge is one of reeducation. As we make greater efforts to meet the needs of people who were injured many years ago, we recognize the importance of updating their knowledge of preventive practices, many of which were formerly unknown. As highlighted by the writing of Roberta Treischmann and Bob Menter, that mission is part of a larger one concerned with meeting the needs of people with a spinal cord injury who are aging.(7)(8) 

Other preventive interventions must be directed to the environment. Some of our attention, indeed, must be focused on the physical environment and its barriers: the curbs, doorways, and stairways within our communities. Human features of the environment, however, have the highest priority for intervention. One objective is to assist persons with spinal cord injury to receive the tangible and emotional support the~’ need from others. Another is changing an attitudinal environment that may reflect condescension and stereotyped perceptions. 

The third, and last, perspective on secondary disabilities is their service delivers’ implications. Social institutions—such as hospitals, independent living centers, and government agencies—all play potentially important roles in preventing secondary impairments. These institutions exist in a milieu of social policies, economic forces, and political factors that cannot be ignored. The number and variety of services required by persons with spinal cord injury dictate the utter necessity of networking and coordination among the many programs and agencies that are potential resources for these persons.

An outstanding accomplishment of the last 25 years has been the demonstration of the benefits of a service system for persons with newly incurred spinal cord injury. This achievement reflects the efforts of the Model Spinal Cord Injury Systems, supported by the National Institute on Disability and Rehabilitation Research. The primary aim of the 13 existing systems is to assure the continuity, timeliness, and appropriateness of services that begin at the accident scene and continue after the person has completed inpatient rehabilitation and has resumed life in the community. 

As indicated in the writings of Gerben Dejong and Bob Griss, manifold forces are operating today that in aggregate are jeopardizing the availability, comprehensiveness, and continuity of services for persons with spinal cord injury.9’10 Many of those threats are related to consequences—both intended and unintended—of how health services are currently being reimbursed. Marginally capable rehabilitation units within general hospitals are proliferating, and sponsorship pressures are progressively compressing the duration of inpatient rehabilitation for patients with recent spinal cord injury. 

Those erosive influences place a premium on finding new ways to achieve effective cooperation among agencies and programs serving persons with spinal cord injury and on undertaking new strategies aimed at preventing secondary impairments and their consequences. 

The new strategic possibilities we are challenged to examine are in terms of public health viewpoints and resources. This strategy’s emergence is due to the effective advocacy of the National Council on Disability. Recommendations on fleshing out that strategy are, of course, a prime purpose of this colloquium. However, thanks to the writings of Vernon Houk, Tom Seekins, and their colleagues, at least some of the possibilities have already been envisioned.(11)(12) One possibility is to exploit the expertise of State departments of public health in operating surveillance systems in order to identify needs for services, facilitate access to appropriate services, and evaluate the efficacy of services. 

A second possibility is inherent in the traditional public health emphasis on public education. By that means, for example, it may be possible to bring prevention-oriented information to persons with spinal cord injury who are sometimes far out of reach of rehabilitation programs or independent living centers. 

Future Research - One of the expressed goals for this colloquium is to answer the question, Which areas require research? We might wish to answer, “all areas.” But that would not really be helpful in view of the massive existing constraints on available financial support for research. A responsible answer must suggest priorities about which project should be funded first, and which should be funded later. 

In considering such priorities, I urge that we not limit our attention solely to the development of new, exciting, untried preventive interventions. We also need to assign priority to research that evaluates the effectiveness of some older, widely employed practices that have escaped rigorous assessment. The universe of programs and services for persons with spinal cord injury is rife with examples of practices that rest wholly on individual practitioner experience, local program conventions, or the pronouncements of ostensible authorities, rather than on solid, research-based evidence. 

Many of our most cherished clinical convictions, too, require rigorous empirical scrutiny (for example, the widely shared expectation regarding benefits of various health promotion practices for preventing secondary impairments). Such practices include nutrition, exercise, and stress management regimens. Notwithstanding their appeal a priori, systematic, research-based evidence for the preventive efficacy of most of those regimens is lacking for many secondary impairments. 

To conclude, in the program for this colloquium, my presentation was entitled, “Setting the Conceptual Landscape.” That landscape has turned out to be shrouded in darkness. I trust our deliberations during the next 2 days will go far in replacing that darkness with light. Thank you. 

References

1. Marge M. Health promotion for persons with disabilities: moving beyond rehabilitation. Amer J Health Promotion 1988;2:29- 35.

2. Nagi SZ. An epidemiology of disability among adults in the United States. Milbank Memorial Fund 1976;54:439-67.

3. Wood PHN, Badley EM. People with disabilities: toward acquiring information which reflects more sensitively their problems and needs. New York: World Rehabilitation Fund,1980.

4. World Health Organization. International classification of impairments, disabilities, and handicaps: a manual of classification relating to the consequences of disease. Geneva: World Health Organization, 1980.

5. Melvin JL, Nagi SZ. Factors in behavioral responses to impairments. Arch Phys Med Rehab 1970;51:552-7.

6. Krause JS, Crewe NM. Prediction of long-term survival of persons with spinal cord injury: an 11-year prospective study. Rehab Psychol 1987; 32:205-13.

7. Treischmann R. Aging with a disability. New York: Demos, 1987.

8. Menter R. Aging and spinal cord injury: is there a faster decline? In: Mattox S, ed. Spinal network. Boulder, Colorado: Spinal Network, 1987:77-9.

9. DeJong G. Medical rehabilitation outcome measurement in a changing health care market. In: Fuhrer MJ, ed. Rehabilitation outcomes: analysis and measurement. Baltimore, Maryland: Brookes, 1987:261-71.

10. Griss R. Measuring the health insurance needs of persons with disabilities and chronic illness. Access to Health Care 1988;1:1-64.

11. Honk VN, Thacker SB. The Centers for Disease Control program to prevent primary and secondary disabilities in the United States. Public Health Rep

1989;104:226-31.

12. Seekins 1, Smith NJ, McCleary T, Clay J, Walsh JA. Secondary disability prevention: involving consumers in the development of policy and program options. J Disability Policy Stud 1990 (in press).

REPORTS FROM THE WORKGROUPS (20 pages)

Cardiovascular-Cardiopulmonary Secondary Disabilities

Case Definition - Spinal cord injuries result in sudden and drastic changes in the health status and lifestyle of those injured and lead to a loss of health and fitness and to an increased risk for secondary cardiovascular-cardiopulmonary (CV-CP) disabilities Among patients with high-level lesions, paralysis of intercostal and abdominal muscles can severely limit pulmonary ventilation and the ability to cough, which increases the probability of developing life-threatening pulmonary problems. Furthermore, immobilization of the lower limbs may also precipitate venous stasis, blood pooling, and edema due to inactivity of the venous muscle pump. This situation may lead to deep venous thrombosis (DVT) and pulmonary embolism. 

A diminished sympathetic autonomic nervous system (ANS) outflow can limit the ability of a person with a spinal cord injury (SCI) to exercise; sympathetic stimulation is required to stimulate that person’s normal cardiovascular reflex responses. These reflexes normally augment blood flow to metabolically active skeletal muscles to provide more O~ and fuel substrates while increasing the rate of metabolic end-product removal. Such responses include the following: vasoconstriction of relatively inactive tissues (e.g., gut, kidneys, ~.kin), vasodilation of skeletal muscle arterioles, venoconstriction (which facilitates venous return), and increases in heart rate, myocardial contractility, stroke volume, and cardiac output.L2 Although these reflexes are absent to varying degrees in most persons with SCI, in those with lesions above TI, all sympathetic nerves that innervate the heart (from T1-T4) have interruptions, which limit cardioacccleration, myocardial contractility, stroke volume, and cardiac output significantly . With this condition, any cardioacceleration that occurs with exercise may be primarily due to withdrawal of vagal parasympathetic tone to the S-A node. In addition, reduced sympathetic outflow due to spinal injuries will probably impair the thermoregulatorv capacity of the person with SCI because of inappropriate blood flow distribution and insufficient sweating response below the level to the lesion. 

Although wheelchairs can help in the rehabilitation process by permitting more independence, arm fatigue while operating a wheelchair and exercising discourages many wheelchair users from leading active lives. Unfortunately, a sedentary lifestyle decreases physical fitness and functional capacity further. Specific exercise programs are needed to break the vicious cycle of sedentary lifestyle and loss of fitness and to increase the chances of a person with SCI being rehabilitated.”2 By incorporating specialized medical procedures as well as by making appropriate Lifestyle changes (including no smoking, proper diet, and regular exercise), a person with SCI can avoid or alleviate some secondary CV-CP problems. These changes may also reduce the cost of health care substantially. 

Many secondary CV-CP disabilities that are due to spinal injuries probably stem from skeletal muscle paralysis and the loss of ANS sympathetic function. This situation reduces a person’s work and exercise capability and, typically, leads to a sedentary lifestyle. Some of the secondary problems that the group discussed include loss of cardiopulmonary (aerobic) fitness, excessive muscular and cardiopulmonary stresses, rapid onset of fatigue when working or operating a manual wheelchair, increased risk factors for coronary heart disease (CHD), blood pooling in the lower extremities, peripheral edema, deep venous thrombosis, pulmonary embolism, autonomic dysreflexia (hyperreflexia), blood pressure problems, difficult breathing (in persons with high-level SCI), impaired ability to cough (in persons with midthoracic and higher SCI), aspiration or swallowing problems, loss of pulmonary compliance or fibrosis, pneumonia, inappropriate nutrition (obesity or malnutrition), and poor lifestyle habits (smoking and alcohol or illicit drug use). 

Epidemiology - In the United States, there are currently more than 150,000 persons with SCI., and each year about 10,000 more persons receive a spinal cord injury.(4) Most spinal injuries occur during motor vehicle crashes (more than 38%), sports or physical activities, and the commission of crimes.(4)(5) Before World War II, 80% of persons with SCI died within 3 years of injury, primarily because of kidney and pulmonary infections.(6)(7) With the advent of antibiotic drugs and advances in surgical techniques, paraplegic persons have a near-normal life expectancy. For example, persons with quadriplegia tend to have a life expectancy that is about 10% lower than able bodied people.(8) Generally, the greater a person’s age when injured, the higher the level of injury, and the more complete the lesion, the lower the life expectancy.(9) At present, the most common causes of death in persons with long-term SCI are related to a variety of CV-CP disorders.4’°’2 Le and Price report that the death rate in a group of persons with SCI was 228% greater than that of their age- and gender-matched able bodied control group.(10) This problem is due in part to a sedentary lifestyle and the consequential degenerative changes in the cardiovascular system.(11-15) Pulmonary problems are the primary cause of death in persons with short-term SCI (especially among those with high-level injuries).

Prevention Strategies - Strategies to prevent secondary CV-CP disabilities after a spinal injury include periodic medical evaluations of the patient to identify risk factors and to detect early stages of medical problems and their etiology. Where possible, the doctor intervenes appropriately. Because most DVT and pulmonary embolism occur in the acute stage of spinal injury, prophylactic lower limb compression and anticoagulation therapy are common interventions. To a large extent, preventing secondary CV disabilities involves prescribing appropriate health practices for the patient on subjects such as smoking, appropriate nutrition for weight control, sodium and dietary-fat intake, appropriate physical activities, and illicit drug use. In addition, patients are advised to adhere strictly to prescribed medication schedules to control potentially hazardous conditions (e.g., high blood pressure).

Preventing secondary pulmonary disabilities in persons with high-level SCI includes regular evaluation by a physician of swallowing, pulmonary function, and chest wall mobility. If a tracheostomv has been done, infections and stenosis must he avoided. Manually assisted coughing may he required to maintain an airway if the patient needs aspiration. Although no longer available, a cough machine would also be useful for such a patient. Breathing exercises with a resistive device may improve respiratory muscle strength. The patient can be taught to use the tongue to get air (frog breathing) when normal breathing stops. Because persons with SCI are at a higher risk for pneumonia, they should avoid crowded areas to reduce their chances of catching colds and they should be vaccinated for influenza. In addition, their seat backs should be adjusted to a 20° recline from vertical to avoid kyphosis. 

Much of the workgroup’s discussion focused on the need for persons with SCI increasing their physical activity, because inactivity appears to be largely responsible for their increased risk of secondary CV-CP disabilities. Arm exercise (e.g., arm crank ergometry and wheelchair activity) has traditionally been used to stress test and train wheelchair users.(2) Some studies suggest that CHD risk factors can be reduced in persons with SCI by regular arm exercises. As with sedentary and active able bodied persons, the high risk of CHD is shown by the significantly lower blood concentrations of high-density lipoprotein-cholesterol (HDL-C) in sedentary persons with SCI than in athletic persons with SCI. Recently, Hooker and Wells reported a significant increase in HDL-C level (+20%) and a decrease in total cholesterol (-8%) and in low-density lipoprotein-cholesterol (LDL-C) level (-15%) in persons with SC1 after 8 weeks of moderate-intensity wheelchair ergometer training (60% to 70% peak oxygen uptake for 20 minutes a day, three times a week).’5 These beneficial alterations in blood lipid profile can be extrapolated to a mean decrease of 2O% in future risk for coronary artery disease. Thus, arm exercises may improve SCI patients’ health and reduce their cardiovascular risks similarly to the way in which leg exercises benefit able bodied persons. Because the upper body has small muscle mass and is more susceptible to fatigue, however, arm exercise alone will not produce the same high levels of cardiopulmonary fitness that leg exercise will. 

The group discussed the use of functional electrical stimulation (FES) exercise to increase cardiopulmonary fitness. During the past 10 years, FES research has been conducted with the goal of inducing exercise in paralyzed lower limb muscles.(6)(9) The foremost requirements for FES use is that the muscles to be exercised are paralyzed due to upper motor neuron damage and that the motor units (lower motor neurons and the skeletal muscle fibers they innervate) are intact and functional. Typically in the FES technique, electrical impulses from a stimulator are used and skin surface electrodes are placed over motor points to induce tetanic contractions of controlled intensity directly. Thus, FES-induced exercise of the paralyzed legs has the potential to activate a large muscle mass that otherwise would lie dormant. In addition, FFS exercise appears to increase blood circulation by activating the venous muscle pump. This effect may reduce venous pooling in the legs and increase ventricular stroke volume and cardiac output. FES techniques may also have several other clinical applications including preventing DVT prophylaxis, reducing excessive edema, and alleviating orthostatic hypotension.(20) Ultimately, FES may lead to exercise modes that can raise the health and cardiopulmonary fitness of SCI patients to levels higher than can be attained with only arm exercise. Quadriplegics will probably find this involuntary exercise particularly advantageous because of the small muscle mass they can control. 

In an effort to promote higher levels of cardiopulmonary fitness in persons with SCI a cycle ergometer propelled by FES of the paralyzed lower limb muscles was designed and constructed by Petrofsky and coworkers.(21) In 1984, Therapeutic Technologies, Inc., Tampa, Florida, began manufacturing sophisticated versions of this FES cycle ergometer for clinical and home use. Computer-controlled FES of the quadriceps, hamstrings, and gluteus maximus muscle groups is used to induce contractions at appropriate pedal positions. When operating at the 50-revolutions-per-minute (rpm) target pedal rate, these cycle ergometers

induce 50 contractions of each bilateral muscle group per minute (a total of 300 muscle contractions per minute); the cyclic stimulation pattern and intensity are controlled by a microprocessor. When the pedal rate falls below 35 rpm, exercise is automatically terminated. Since many persons with SCI can pedal continuously for 30 minutes, FES cycle ergometry appears to be well suited for endurance training. Typically, exercise is prescribed for three sessions per week. Physiologic studies conducted on persons with SCI indicate that FES exercise elicits relatively high aerobic and cardiopulmonary responses as well as favorable central and peripheral hemodynamic responses.(22-26) This suggests that FES may provide more effective cardiopulmonary fitness training than arm exercises, especially for patients with quadriplegia who have weakened arm musculature. This exercise can be compared with walking or jogging by able bodied persons. 

Recent research indicates that cardiopulmonary fitness training for SCI patients can be further enhanced by using a hybrid form of exercise training consisting of simultaneous FES cycling and voluntary arm cranking. The results of studies on physiologic responses to this hybrid exercise (and other combinations of FES and voluntary exercises) suggest that hybrid exercise may provide better cardiopulmonary training than FES or arm exercise alone.(27-29)This better effect may be due to the larger muscle mass used, the greater magnitudes of metabolic and cardiopulmonary responses elicited, and possibly the better circulation of blood to both upper and lower body muscles. More research is needed to establish which are the best hybrid exercises and to document the extent to which cardiopulmonary fitness can be improved with long-term training. 

Although FES cycling appears to be beneficial in improving cardiovascular fitness, data documenting long-term reductions in secondary disabilities are not available. Therefore, some clinicians are reluctant to prescribe this exercise for their patients. In addition, FES cycle ergometers are not readily available to many SCI patients, and the cost of this exercise is high (more than $100 per clinic session). Potential patients should be informed of the known potential benefits and risks of FES exercise and should clearly understand that FES will not regenerate damaged neurons or cure paralysis. They should also understand that as with voluntary exercise, any health and fitness benefits derived from FES exercise will be lost several weeks after the activity is discontinued. So, to maintain beneficial effects, FES exercise must become part of the person’s lifestyle. 

Further Research

• Evaluate currently available devices and techniques to establish their efficacy in preventing secondary CV-CP disabilities. Such studies are difficult to do and to control for many reasons, including expense, the long time required, patient compliance problems, and the diversity of the problems persons with SCI face.

• Quantify the frequency and costs of secondary CV-CP disabilities after spinal cord injuries.

The Role of Public Health

• Establish information centers to answer questions about rehabilitation after spinal cord injuries and to teach the public how to prevent such injuries and about the problems related to them. Teach persons with SCI how to deal with their condition and to recognize signs and symptoms of secondary disabilities. Teach health professionals how to counsel patients effectively.

• Establish wellness education programs to promote health and prevent disease among those with spinal injuries. Educate family and friends regarding the problems and needs of persons with SCI so that family and friends can reinforce behavior that promotes wellness.

• Establish uniform guidelines on third-party payments for CV-CP prevention therapies. Many persons with SCI do not have access to state-of-the-art treatments, which may be due to their geographic location, lack of transportation, time constraints, or inability to pay. Make any effective technology or therapy available to all who may benefit from it.

References

1. Glaser RM. Exercise and locomotion for the spinal cord injured. In: Terjung RL, ed. Exercise and sports sciences reviews, vol. 13. New York: MacMillan, 1985:263-303.

2. Glaser RM, Davis GM. Exercise testing and prescription for wheelchair-dependent individuals. In: Franklin BA, Gordon S, Timmis GC, eds. Exercise in modern medicine: testing and prescription in health and disease. Baltimore, Maryland: Williams and Wilkins, 1989:237-67.

3. Freyschuss U, Knuttson E. Cardiovascular control in man with transverse cervical cord lesions. Life Sci 1969;8:421-4.

4. Young JS, Burns FE, Bowen AM, McCutcheon R. Spinal cord injury statistics: experience of the regional spinal cord injury systems. Phoenix, Arizona: Good Samaritan Medical Center, 1982.

5. Bruce DA, Schut L. Sutton LN. Brain and cervical spine injuries occurring during organized sports activities in children and adolescents. Prim Care l984;11:175-94.

6. Jackson RW, Fredrickson A. Sports for the physically disabled: the 1976 Olympiad (Toronto). A J Sports Med 1979;7:293-6.

7. Stauffer ES. Long-term management of traumatic paraplegia. In: Pierce DS, Nickel VH, eds. The total care of spinal cord injuries. Boston: Little, Brown, 1978:81-102.

8. DeVivo MJ, Fine PR, Maetz HM. Stover SL. Prevalence of spinal cord injury: a re-estimation of employing life table techniques. Arch Neurol 1980;37:707-8.

9. Hrubek Z, Ryder RA. Traumatic limb amputations and subsequent mortality from cardiovascular disease and other causes. J Chron Dis 1980; 33:239-50.

10. Le CT, Price M. Survival from spinal cord injury. J Chron Dis 1982;35:487-92.

11. Yekutiel M, Brooks ME, Ohry A, Yarom J Carel R. The prevalence of hypertension, ischemic heart disease and diabetes in traumatic spinal cord injured patients and amputees. Paraplegia 1989;27:58-62,

12. Heldenberg D, Rubinstein A, Levtov D, Werbin B, Tamir I. Serum lipids and lipoprotein concentrations in young quadriplegic patients. Atherosclerosis 1981;39: 163-7.

13. LaPorte RE, Adams LL, Savage DD, Brenes G, Dearwater S, Cook T. The spectrum of physical activity, cardiovascular disease and health: an epidemiological perspective. J Epidemiol 1~S4;12O:507-17.

14. Dearwater SP, LaPorte RE, Robertson RJ, Brenes G, Adams LL, Becker D. Activity in the spinal cord injured patient: an epidemiologic analysis of metabolic parameters. Med Sci Sports Exerc 1986;18:541-4.

15. Hooker SP, Wells CL. Effects of low- and moderate-intensity training in spinal cord-injured persons. Med Sci Sports Exerc 1989;21:1S-22

16. Mortimer JT. Motor protheses. In: Brookhart JM, Mountcastle VB, Brooks VB, Geiger SR, eds. Handbook of physiology. The nervous system II. Bethesda, Maryland: American Physiological Society, 1981:15S-87.

17. Benton LA, Baker LL, Bowman BR, Waters RL. Functional electrical stimulation: a practical clinical guide. Downey, California: Professional Staff Association of the Rancho Los Amigos Hospital, 1981.

18. Cybulski CR, Penn RD, Jaeger RJ. Lower extremity functional neuromuscular stimulation in cases of spinal cord injury. Neurosurgery 1984;15:I32-46.

19. Glaser RM. Physiologic aspects of spinal cord injury and function neuromuscular stimulation. Cen Nerv Syst Trauma 1986;3:49--62.

20. Glaser RM, Rattan SN, Davis GM, et al. Central hemodynamic responses to lower-limb FNS. In: Proceedings of the 9th Annual Institute of Electrical and Electronics Engineers Conference. Boston, Massachusetts: Engineering in Medicine Biology Society, 1987:615-17.

21. Petrofsky JS, Phillips CA, Heaton HH Ill, Glaser RM. Bicycle ergometer for paralyzed muscles. J Clinical Engineering 1984;9:13-19.

22. Glaser RM, Figoni SN, Collins SR. et at. Physiologic responses of SC subjects to electrically induced leg cycle ergometry. In: Proceedings of the 10th Annual Institute of Electrical and Electronics Engineers Conference. New Orleans, Louisiana: Engineering in Medicine and Biology Society, l988:i6~-4U.

23. Figoni SF, Glaser RM, Henershot DM, et al. Hemodynamic responses of quadriplegics to maximal arm-cranking and FES leg cycling exercise. In: Proceedings of the 10th Annual Institute of Electrical and Electronics Engineers Conference. New Orleans, Louisiana: Engineering in Medicine and Biology Society, 1988:1636-7.

24. Ragnarsson KT, O’Daniel W Jr., Edgar R, Pollack S, Petrofsky J, Nash MS. Clinical evaluation of computerized functional electrical stimulation after spinal cord injury: a multicenter pilot study. Arch Phys Med Rehabil I988;69:672-7.

25. Figoni SF, Glaser RM, Hooker SP, et al. Peak hemodynamic responses of SCI subjects during FNS Leg Cycle Ergometry. In: Proceedings of the 12th Annual Rehabilitation Engineering Society of North America. New Orleans, Louisiana: Rehabilitation Technology, 1989:97-8.

26. Pollack SF, Axen K, Spielholz N, Levin N, Haas F, Ragnarsson KT. Aerobic training effects of electrically induced lower extremity exercises in spinal cord injured people. Arch Phys Med Rehabil 1989;70:214- 19.

27. Glaser RM, Strayer JR. May KP. Combined FES and leg voluntary arm exercise of SCI patients. In: Proceedings of the 7th Annual Institute of Electrical and Electronics Engineers Conference. Chicago, Illinois: Engineering in Medicine and Biology Society,1985:308-13.

28. Davis GM, Servedio FJ, Glaser RM, et. al. Hemodynamic responses during electrically induced leg exercise and arm crank ergometry in lower limb disabled males. In: Proceedings of the 10th Annual Rehabilitation Engineering Society of North America. San Jose, California: Rehabilitation Technology, 1987:591-3.

29. Glaser RM. Functional neuromuscular stimulation for physical fitness training of the disabled. In: Kaneko M, ed. Fitness for aged, disabled and industrial workers. Champaign, Illinois: Human Kinetics Books, 1990:12714.

Genitourinary and Bowel Secondary Disabilities

Fertility - Infertility in the man with SCI is a direct sequelae of the injury itself; it is caused primarily by the inability to ejaculate and by poor semen quality even if ejaculation is achieved by electrostimulation (EES).

Of the 10,000 spinal cord injuries that occur each year, more than 8,000 happen to men. The vast majority of men with SCI are between 15 and 24 years of age—prime reproductive years. Fathering children is important to those men. 

Ejaculatory dysfunction is the major cause of male infertility and occurs in 93% or more of patients with complete spinal injuries and in 30% to 50% of patients with incomplete injuries. The exact incidence may be difficult to document because retrograde ejaculation is common. For those who are unable to ejaculate, the goal is to obtain their semen in a controlled manner and then use this semen for artificial insemination. This is most often done by vibratory stimulation and electroejaculation. Vibratory stimulation’s success is difficult to document; electroejaculation, however, is the most common and reliable technology for obtaining semen. Semen can be obtained by EES 70% to 90% of the time. 

Unfortunately, the quality of sperm obtained by EES is generally poor, compounding the primary infertility problem. The reason for this is unknown, but contributing factors include bladder management, urinary tract infections (UTIs), scrotal hyperthermia, and hormonal changes. Semen processing techniques are available that may improve fertility rates. 

Determining the true level of interest in the problem and gauging the extent to which consumers will use current technology to achieve pregnancy is difficult. Most participants in the workgroup believed consumer interest was not high. However, 22 spinal cord treatment centers in the country now offer EES with insemination or in vitro fertilization. 

Improving fertility in persons with SCI is costly, averaging more than $1,000 for each electroejaculation and artificial insemination procedure. Added to this cost are the costs of evaluating an apparently normally reproductive spouse, in vitro fertilization, and more sophisticated semen handling techniques. For many patients the costs of these procedures are prohibitive. Furthermore, the overall success rate of these techniques is not high, which discourages patients even more. 

Urinary Tract Infections - Bacterial invasion of the urinary tract in a person with SCI is almost inevitable following the acute phase of the injury when catheterization is required to drain the bladder. Urologic complications secondary to chronic or recurring UTI cause repeated hospitalizations, increased costs, and long-term morbidity regardless of the bladder-emptying system. Secondary complications include repeated bouts of septicemia, formation of calculi, epididymitis, reflux, perinephric abscess, and renal failure.

Despite the number and frequency of these complications, defining urinary tract infections in persons with SCI is difficult. Many patients tolerate a long-term invasion of bacteria without adverse sequelae and with no signs and symptoms. The frequency of UTI following SCI and, indeed, the role of chronic bacteriuria in the pathogenesis of long-term complications is unclear. Treatment of bacteriuria in asymptomatic patients is a controversial issue, and guidelines for treatment have yet to be established. 

A retrospective analysis of 1,100 patients at the University of Alabama Spinal Cord Injury Center showed that only 25% of catheter-free patients had sterile urine during routine annual check-ups. No objective data exist, however, on the exact frequency with which persons with SCI actually develop UTI during a specified time or about the duration of UTI in outpatients. Currently a study is under way to determine (1) how frequently patients are infected during a 12-month period, (2) whether infection can be eradicated and for how long, (3) how antibiotics cause resistant strains of bacteria to develop, (4) whether personal habits affect the incidence or duration of infection, (5) the overall costs of diagnosing and treating UT!, and (6) the incidence of pressure ulcers among persons with SCI. 

Bladder Function Disorders - Neurologic damage to the spinal cord causes bladder-emptying disorders directly related to the acute injury. Most persons with SCI have sustained injuries above the conus; and after an initial period of a contractility, most have to deal with problems relating to detrusor or hyperreflexia and detrusor sphincter dysynergia. Elevated intravesical pressure leads to bladder trabeculation, vesicoureteral reflux, pyelonephritis, stone disease, upper tract deterioration, and (in rare cases) renal failure and death.

The usual bladder management for persons with new SCIs is intermittent catheterization to achieve a catheter- free state. Patients unable to continue a program of intermittent catheterization arc put on a reflex program. A reflex program is not feasible for female patients, however, because it causes incontinence; therefore many females must use indwelling catheters. 

Patients on these reflex programs must be monitored frequently by assessing intravesical pressure urodynamically and by checking upper urinary tracts either by renal function studies, radionucleide scanning, or radiographic imaging of the kidney and bladder. Although these surveillance programs are expensive, cost analysis of their usefulness is not available. Studies of intermittent catheterization within the first 24 months after injury indicate that the incidence of trabeculation varies from 25% to 54%, reflux from 13% to 20%, and hydronephrosis from 5% to 7%; stone disease varies 7%, and pyelonephritis varies 11%. These disabilities increase health care costs and cause further hospitalization and loss of income for the patient. 

Opinion is diverse about the best method of bladder management. Some researchers advocate intermittent catheterization for all, but others advocate surgery such as a sphincterotomy or a bladder neck resection. To maintain a dry, catheter-free interval, medications (such as ditropan and probanthine) to lower the detrusor pressure must be used. These medications may have undesirable side effects and have been shown to alter bowel motility. 

Surgical techniques such as bladder augmentation and continent urinary diversion are now being used to construct low pressure reservoirs and prevent upper urinary tract deterioration in high-risk patients. These procedures are costly and are associated with a risk of morbidity and prolonged hospitalization. Although their effectiveness has not been definitively demonstrated, they offer treatment options to those who once would have had rapid renal deterioration. 

Prevention strategies are difficult to evaluate. With the widespread use of urodynamic testing, we may be able to define the population that would benefit from surgery better. We must learn what the early predictors of abnormality are. Long-term surveillance of bladder management must be correlated with long-term studies of renal function. The widespread use of renal scans to evaluate effective renal plasma flow (ERPF) has been helpful. No standards exist, however, for long-term surveillance of upper urinary tract infections. 

Bowel Elimination Disorders - In persons with SCI, the sensation of rectal fullness and the ability to relax and contract the external sphincter voluntarily is lost. This loss results in a series of secondary complications associated with bowel elimination, including bowel incontinence, impaction, and paralytic ileus. These problems are almost universal in the SCI population and can undermine the efforts of all professionals (e.g., physicians, physical therapists, psychiatrists) to rehabilitate the person with SCI, thus adding to overall health care costs. In addition, long-term disabilities that result from bowel elimination problems such as fissures, hemorrhoids, skin excoriation, and pressure sores lead to further hospitalizations and considerable medical expense. 

Strategies to prevent bowel disorders center around establishing a predictable elimination pattern. These strategies include a high-fiber diet, increased fluid intake, digital stimulation, use of a rectal suppository, manual removal, and valsalva maneuvers. Recently, a pulsatile water stimulator and evacuator has been tried at various spinal cord injury centers with limited success. 

Recommendations

Fertility
• Survey persons with SCI and manufacturers of electrostimulators to determine how much interest each treatment center should have in pursuing the problem of infertility and its solutions.

• Find ways to prevent semen quality from deteriorating. Research further the various factors responsible for poor semen quality.

• Develop teams of health professionals concerned with reproduction in the SCI population. Include, for example, urologists, obstetricians, and reproductive biologists.

• Make electrostimulation less impersonal. Research and develop a home kit and review vibratory stimulation with pharmacologic manipulation critically. Improve the design of electrostimulators to reduce the incidence of autonomic dysreflexia, to prevent retrograde ejaculation, and to reduce discomfort.

• Ensure that insurance providers and Medicare cover the costs of infertility treatment.

• Study the reproductive problems of women with SCI, and recognize these problems as public health problems.

Urinary Tract Infections
• Agree on a definition of a case of UTI in persons with SCI. Only then can epidemiologic studies be designed to answer questions about UTI’s long-term consequences and Costs and the risk factors that predict which patients are likely to develop UTI complications.

• Research the predictors of bacterial invasion in persons with SCI. Such research is critical because no objective evidence shows that eradicating bacteriuria will reduce the long-term complications of UTI. In addition, physicians risk selecting out multi-drug resistant organisms when treating patients’ infections.

• Standardize UTI prophylaxis and prevention methods for long-term complications. Currently, no protocol exists for treating significant but asymptomatic bacteriuria. Use epidemiologic methods to establish standardized criteria for treatment in persons with SCI.

• Study the factors that influence the long-term sequelae of bacteriuria. Evaluate the specific urodvnamics of each patient before treatment. Detrusor pressure, for example, affects the long-term complications of patients with UTI directly. In addition, assess various bladder management protocols, problems with intermittent catheterization and colonization, and problems associated with the patient’s sex.

Bladder Function Disorders
• Research the differences in bladder management for men and women. Study intermittent catheterization in women to determine the medical versus social advantages as well as its cost/benefit ratio. Assess the long-term effects of different bladder management programs for men on the basis of data available at the model spinal injury treatment centers.

• Study the effects of using the bowel to augment bladder function and its long-term implications on carcinoma of the bladder. Determine whether these operations preserve upper urinary tract function or whether they are just a costly way of preventing incontinence.

• Use the results of case-control studies to standardize the bladder management of persons with SCI and to enable health care providers to make better decisions about which technology to use. Use these data also to define quality of care, outcomes, and treatment goals for specific patient populations. 

Bowel Elimination Disorders
• Study the physiologic effects of diminished bowel motility after SCI. Many patients are given anticholinergic medications that alter bowel motility and compound secondary disability. Address the interaction of bowel and bladder programs, especially those programs that maintain a dry interval between intermittent catheterization through medication.

• Develop public health programs to train people to administer bowel programs. Because bowel programs are nonprescription care, little funding is available to train people to administer them.

• Survey model SCI centers for information on the effects of long-term bowel dysfunction.
 

Neuromusculoskeletal Secondary Disabilities

Case Definition - There are many conditions in the neuromusculoskeletal disabilities group: neurogenic pain; cystic myelopathy; noncystic myelopathy; weakness; spasticity; heterotopic ossification; musculoskeletal pain from tendinitis, bursitis, or degenerative arthritis; carpal tunnel syndrome; autonomic dysfunction; joint contracture; degenerative disc disease of the spine; and fracture due to osteoporosis. We have focused our discussion on pain, spasticity, weakness, heterotopic ossification, musculoskeletal pain, fracture, and contracture. In several instances our case definitions needed further refinement. 

Pain - A good classification system for pain syndromes does not exist. Therefore, the workgroup developed a proposed pain classification system which divides pain into four broad categories: peripheral, central, visceral, and psychogenic (Table 1). The major pain syndrome addressed was central spinal deafferentation pain, defined as a burning pain located in anesthetic areas more than two levels below the level of the spinal lesion. This syndrome cannot be controlled by simple analgesics; it results in limitations in exercise and sleep and in mood 

Table 1 Proposed Pain Classification System 

1.    Peripheral Radicular/segmental characteristics:
a.    location: at or above sensory level
b.    character: burning, stabbing, accompanied by hyperpathia

2.    Peripheral Musculoskeletal characteristics:
a.    location: back, joints, muscles
b.    character: aching, position or activity related

3.    Central Functional characteristics:
a.    location: below sensory level up to two segments, within the zone of partial preservation (if any)
b.    character: burning, stabbing

4.    Central Diffuse characteristics:
a.    location: wide area of distribution below injury level
b.    character: burning, electric shocks

5.    Visceral characteristics:
a.    location: abdominal
b.    character: burning; visceral pathology absent

6.    Psychogenic swings, interfering with self-care and mobility. This definition does not include junctional spinal pain, which is located within two levels of the lesion and is a burning, band-like pain. It does not include radicular pain or dysesthetic pains and sensations experienced by patients with incomplete lesions in areas where sensation is partially preserved.

Spasticity - easy to describe but difficult to define. It is a condition of increased muscular tone and hyperactive reflexes that interferes with mobility, positioning, sleep, and coordinated movement.

Weakness - The workgroup discussed weakness due to failure to treat the injury appropriately, failure to improve from the injury when improvement is to be expected, and failure to maintain strength after rehabilitation. Excluded was weakness due to the injury itself or to a second injury.

Heterotopic Ossification - Heterotopic ossification is the development of bone in abnormal anatomic locations. In the person with SCI, heterotopic ossification occurs most frequently around joints or adjacent to long bones. Severe heterotopic ossification can lead to ankylosis of the joint. 

Musculoskeletal Pain - Upper extremity pain from degenerative musculoskeletal disease limits function in both persons with paraplegia and quadriplegia who depend on their upper extremities for locomotion and prehensile activities. Among other conditions, it includes pain due to rotator cuff tendinitis, bursitis, bicipital tendinitis, glenohumeral joint degeneration, and carpal tunnel syndrome. 

Fracture - This secondary impairment classification includes fracture of the long bones or compression fracture of the vertebrae due to osteoporosis. 

Contracture - Joint contracture is a limitation of the normal range of motion of joint, which interferes with positioning and functional activities. 

Epidemiology - The incidence and prevalence of secondary neuromusculoskeletal impairments can only be estimated. No population-based data are sufficiently detailed or gathered over sufficient time to define them. Current estimates are derived from either the Model Systems Spinal Cord Injury Program or from other hospital-based data pools. Some states now have registries for spinal cord injury, which may lead to more accurate assessments of the extent of these conditions. 

Sound epidemiological studies are needed. They should be both random-sampling studies from multiple registries and cross-sectional longitudinal studies. Three areas must be addressed when the significance of an impairment is being evaluated. First, the predisposing conditions to neuromusculoskeletal conditions must be defined and the persons at risk for developing those conditions must be stipulated. Next, the percentage of those at risk who actually develop a neuromusculoskeletal disability must be defined. Finally, those with a predisposing condition who actually become impaired must be identified. As an example, consider the role of heterotopic ossification in the development of contractures. All severely paralyzed individuals are at risk for developing heterotopic ossification. About 25% to 35% of those at risk develop the condition. But the condition progresses to ankylosis amid functional limitations in only 1% to 3% of those at risk. 

Complications can be divided into two groups: (1) Those more common - musculoskeletal pain, weakness, and contractures; and (2) those less common but functionally significant complications - spasticity, fracture, neurogenic pain, and heterotopic ossification.

Upper extremity pain resulting from degenerative musculoskeletal disease is a significant complication that limits function in both paraplegic and quadriplegic patients using wheelchairs or crutches. The incidence of pain and impaired function increases with time. In our study, although only 21% of the patients who were followed for less than 10 years reported upper extremity pain that required medication or that limited function, 34% of the patients who were followed for more than 10 years did. 

The shoulder is the most common source of joint pain. Rotator cuff tendinitis, bursitis, anterior impingement syndrome, and bicipital tendinitis are common sources of initial pain, all of which are indicative of overuse. Rotator cuff tear and glenohumeral or achroma-humeral joint degeneration are late complications. These conditions, which cause minor problems in most able-bodied people, can be severely disabling for persons with SCI who depend on their arms for locomotion and prehensile tasks. Traditional treatments, which involve resting the affected extremity, may not be feasible without the financial resources necessary for specialized equipment and attendant care. These secondary costs often are not covered under medical insurance policies. We need to explore other therapies to prevent or relieve these painful conditions without compromising the patient’s ability to function. 

The etiology of pain syndromes in the population with SCI may differ from that in the able-bodied population. Carpal tunnel syndrome is an example. More than 75% of paraplegic persons followed for more than 10 years after injury have clinical evidence of median nerve dysfunction. Carpal tunnel pressures, however, are normal in affected paraplegic patients, in contrast to the elevated pressures seen in able-bodied people with carpal tunnel syndrome. Carpal tunnel release, which normalizes carpal tunnel pressures, may not be an appropriate or effective treatment of carpal tunnel syndrome in the SCI population. Adequate studies in this area are lacking. 

Loss of function due to weakness is believed to be a frequent problem; however, the incidence is unknown. Investigating this condition is difficult because the typical course of recovery from spinal cord injury is also unknown. Information on the course of recovery, however, is beginning to become available. Current research is hindered by the existence of several classification and grading systems for SCI, inexact terminology, and a multitude of surgical, medical, and therapeutic interventions. These factors make comparing studies difficult and determining a natural course of recovery impossible. Researchers must know the course of recovery before they can evaluate the effect of interventions on the process of recovery. 

Recovery from spinal cord injury can be divided into two categories: (1) recovery at the level of injury and (2) recovery below the zone of injury. Although most persons with SCI improve at the zone of injury, the extent of recovery may depend upon the level of injury. Retrospective and prospective studies have shown differences in recovery rates between C4- and C5-injured people. Recovery continued beyond 9 months for some persons with SCI. 

The mechanisms underlying recovery at the zone of injury have not been delineated. Possible mechanisms that researchers have proposed for study include neurapraxic recovery in the early phase, peripheral sprouting and muscle hypertrophy in a middle period, and axonal regrowth in a late phase. 

Except in rare instances, recovery below the zone of injury is limited to people with incomplete lesions. Among Frankel B patients (i.e., those with only sensory sparing after injury), patients who can sense pinpricking (so-called Frankel B2 patients) have more favorable prognoses than those who can sense only touch (Frankel B1 patients). Age is a factor in the prognosis of central cord syndrome: a significantly greater proportion of those under 50 years old learn to move about by themselves than those older than 50. 

The factors that may interfere with recovery of strength can be divided in two phases: those that occur early and those that occur late. Inadequate or inappropriate treatment regimens during initial hospitalization, medical and surgical complications that limit participation in therapy, and the development of spasticity will delay or reduce the final degree at which an SCI person will function. The role a patient’s depression or compliance with treatment play in recovery remains to be defined. After discharge from the hospital, other factors become important. Because patients with SCI are discharged before they achieve maximum recovery, failure to maintain a strengthening program after discharge may be a factor in reduced functioning. Frequent hospitalizations; poor follow-up; and inadequate equipment, community services, and support may reduce activity and result in loss of abilities gained during rehabilitation. For persons with SCI who have marginal muscle strength and for older persons with SCI, overuse weakness is a concern. Strengthening programs should be monitored. Weakness due to an overzealous regimen may accelerate the development of the degenerative musculoskeletal conditions discussed previously. 

A study of contractures reveals the multifactorial and interrelational nature of secondary impairment after spinal cord injury. All of the previously mentioned conditions—musculoskeletal or neurogenic pain, weakness, spasticity, fractures, heterotopic ossification, as well as improper positioning, muscle imbalance, and other conditions—can lead to contractures. In turn, contractures, by interfering with proper positioning, are a risk factor for pressure sores. The entire SCI population is at risk for contractures. Contractures are not universal in the SCI population only because most treatment includes starting range-of-motion exercises early, positioning the person with SCI in bed and in wheelchairs properly, and intervening promptly when contractures develop. Without such treatment, contractures will develop in most people with a spinal cord injury. 

According to our definition, spasticity must result in a reduction in optimal functioning; it interferes with mobility, sleep, and proper positioning. Spasticity varies with time of day, position, and other complications, such as infection or pressure sores. Spasticity need not be detrimental, and it may be beneficial. A degree of spasticity may improve circulation, slow the development of osteoporosis, and strengthen weak muscles. Spasticity, as a complication, develops in about 5% to 10% of those at risk. Lesser degrees of spasticity can be managed with range-of-motion exercises and medications, but severe spasticity requires some surgery (e.g., intrathecal baclofen, dorsal rhizotomies, or tendon releases). The ideal treatment would reduce but not eliminate spasticity. Progress in this area is complicated by the lack of a good objective way to measure spasticity. 

Most neurogenic pain can be managed by medications and physical measures. Severe disabling central deafferentation pain occurs in about 5% to 10% of the SCI population. As with spasticity, pain is difficult to quantify objectively. The same stimulus is not perceived equally by different people or by the same person at different times. Many factors influence the effect of pain on an individual’s ability to function. Despite these difficulties, certain procedures seem to be helpful in reducing or removing central pain. The dorsal root entry zone procedure, for instance, is effective in a subgroup of patients with central pain resistant to medical treatment. The expertise required to perform this procedure adequately, however, makes it impractical for widespread use at this time. Appropriate early care can lessen the disabling effect of painful conditions. Diagnosing the type of pain accurately is vital for prescribing appropriate interventions. Avoiding narcotic medications for chronic conditions is of paramount importance. The injudicious use of narcotics will result in an additional secondary disability of narcotic dependence. 

Fracture due to osteoporosis is a significant complication of spinal cord injury. The incidence is unknown, although it must increase with time after injury. Osteoporosis always follows severe paralysis, and recent evidence suggests that the absence of loads on the bones as a result of paralysis is the principal cause. Measurements of the total bone mineral (TBM) content by dual beam photometry indicate that the cranial TBMs of normal, complete paraplegic, and complete quadriplegic males of similar age do not differ. The TBM for the lower extremities of complete paraplegics and quadriplegics is well below normal and essentially equal. This situation accounts for the lower-limb fractures that occur with minimum insult (sometimes merely because of extreme muscle spasm) in some persons with SC!. Of particular clinical significance is the finding that most of the decrease in TBM occurs within 4 months after injury. These findings are important inasmuch as they indicate that treatment directed at preventing bone loss must begin immediately following spinal cord injury. 

Treating lower extremity fractures in persons with SCI requires specialized knowledge. Frequently, the fracture can be splinted (whereas a cast would be used for an able-bodied person). Because persons with SCI lack sensation in the legs, immobilizing their fractures with casts is risky. Abnormal pressure from a poor-fitting cast, edema, or infection will be largely asymptomatic but can result in pressure sores, sepsis, and possible loss of a limb. 

Heterotopic ossification is most common about the hips, then at the knees, shoulders, elbows, and the paravertebral area. It occurs with equal frequency in males and females, is equal bilaterally, and always occurs below the level of neurologic impairment. It occurs most commonly 1 to 4 months after a spinal cord injury. Heterotopic ossification must be differentiated from deep venous thrombosis, cellulitis, joint sepsis, hematoma, fracture, and trauma. The differences can be diagnosed by physical examination, X-ray, venogram, or bone scan. 

Heterotopic ossification prevention has not been well studied in the SCI population. Calcium, diathermy, and ultrasound have not been effective in prevention, but etidronate disodium has some proven benefits for persons with SCI. As an effective prophylaxis, it should be started 2 to 3 weeks after injury and continued for 3 months. If heterotopic ossification is not evident then, etidronate disodium can be stopped; but, if the patient shows signs of heterotrophic ossification, treatment should be continued for at least 1 year. 

Anti-inflammatory agents such as indomethacin and ibuprofen have been reported to prevent heterotopic ossification following total hip replacement. Radiation therapy has also been successful in preventing postoperative heterotopic bone. The effectiveness of these measures has not been tested in persons with SCI in controlled studies. Although they do not prevent ossification, passive range-of-motion exercises lessen disability by maintaining a pseudoarthrosis that will allow continued joint motion. Resting the joint may allow a very small bridge of bone to ankylose the joint completely. This treatment is in contradistinction to the usual treatment for traumatic myositis ossifications, which is to rest the affected limb. 

Once ankylosis has occurred, the heterotopic bone must be resectioned surgically. The most frequent complications from surgery include infection, excessive bleeding, and recurrence of the heterotopic bone. Therefore, if surgery is planned, the following factors must be addressed. Sources of possible infection must be eliminated. If patients have infected skin lesions, surgery should not be performed. Appropriate antibiotics should be prescribed, on the basis of a urine culture, to make the patient’s urine sterile before surgery, and a broad-spectrum antibiotic should be prescribed for 2 to 3 weeks after the operation. A surgical wedge resection that will allow joint motion should be performed rather than a resection of the entire heterotopic bone mass. 

Careful attention to hemostasis during surgery and suction drainage for a few days afterwards are important. Gentle passive range-of-motion exercises can be started 7 to 10 days later. 

Because recurrence after surgical wedge resection is still a major problem, every modality known to have some effectiveness in preventing recurrence should be considered. Etidronate disodium for 2 weeks before the operation, indomethacin, and radiation therapy should all be considered; possibly all three therapeutic agents should be used for patients having a surgical resection. 

Recommendations

Costs
• Develop ways to determine the costs, direct and indirect, of treating neuromusculoskeletal secondary disabilities. Musculoskeletal disabilities may have low direct costs, but the indirect costs of attendant care, equipment, and time lost from work greatly increase the economic impact of these disabilities. 

Prevention
• Develop a system of care for persons with SCI, and encourage all their health care providers to use it. A system of care consists of early referral to a rehabilitation center; consistent and continuous care; and coordination among hospital, outpatient, and community resources.

• Quantify, in rigorous clinical and epidemiological studies, the differences in the rates of complications in patients treated in model care systems and in traditional care systems.

• Assign new revenue sources to fund SCI prevention programs. Assigning a portion of highway fines; alcohol, agricultural, and construction taxes; or sport and hunting license fees to programs for preventing secondary disabilities would place the economic burden on those engaging in activities that cause many spinal cord injuries.

• Begin research projects to determine the best recovery regimens, the natural course of recovery for secondary disabilities, and the effects of various treatment protocols.

• Conduct epidemiologic studies to measure the prevalence, incidence, and severity of secondary neuromusculoskeletal impairments.

• Conduct population-based and case-control epidemiologic studies to determine the risk factors for developing secondary disabilities, the percentage of persons who develop secondary disabilities, and the number who become impaired.

• Research the effectiveness of new versus traditional interventions at decreasing secondary disabilities.

• Study the aging SCI population. Evaluate risk factors for overuse injuries and make recommendations to prevent them.

• Develop a clearinghouse for information related to preventing secondary disabilities among persons with SCI.

• Develop a public health policy for proven clinical approaches that decrease secondary disabilities.

Research
• Establish panels of professionals from all disciplines involved in treating persons with SCI to precisely define neuromusculoskeletal impairment. Outline the data to be collected in a multicenter study of the less common neuromusculoskeletal secondary conditions that affect persons with SCI. Ensure that institutions participate in any such study and that they contract to collect the data as defined. (This approach would also benefit studies on the national course of recovery; at present the results of studies on the effects of different treatment protocols at different locations tend to conflict.)

• Research modifications on existing equipment for persons with SCI and develop new equipment. For example, by reducing the stresses on the upper extremities, more efficient wheelchairs could reduce the incidence of weakness and degeneration disorders.

• Study occupational settings to develop workplace designs that help persons with SCI improve their productivity and give them opportunities for career advancement. Work stations with computers show promise as settings where persons with SCI can work well.

• Evaluate, in long-term studies, holistic treatment approaches. Supply more attendant care or energy-conserving equipment to aging persons who have SC! to prevent overuse injuries and prolong their years of work.

• Research the effectiveness of new and traditional interventions. The panel believes that several recent technologies are being touted as necessary and effective without the support of well-designed, controlled studies. The results of uncontrolled studies show that improvements are due to interventions when, in fact, they are part of the normal course of recovery. Unproven treatment programs can be expensive, especially if long-term participation is supposedly necessary.

The Role of Public Health

• Develop public health policy on an intervention after clinical studies show that it is effective. The public health sector can play a significant role in researching the effectiveness of current approaches and in evaluating innovative technologies and treatments. These roles fall into the categories of information retrieval and transfer, convening specialty groups, surveying provider systems, and transferring technology.

• Improve data collection by making reports on certain secondary impairments mandatory. Develop precise definitions so that the definition for each item of data on persons with SCI will be the same throughout the country. With uniform definitions, researchers can do more accurate epidemiologic studies on incidence, prevalence, risk factors, and costs of secondary disabilities in spinal cord injury. Comparison between different approaches to care will also be possible. 

• Convene meetings and build constituencies. Public health agencies can call together consensus groups to outline data already collected and to set priorities for research and development of care systems. They can help form coalitions of support groups for persons with SCI. Input from these groups can ensure that any policy established will meet the needs of the SCI population. These groups can then lobby for the policy and for dedicated funding sources. 

• Conduct surveillance and quality control programs by using a system patterned after the National Cancer Institute’s Surveillance Epidemiology and End Results (SEER) Program, in which a computerized data base that is updated via telephone contacts with patients and health care providers is used. The SEER system focuses on acquiring data on what treatment protocols do and do not work. A surveillance program can identify (1) insufficiencies in the health care system and (2) subgroups of persons with SCI whose care needs are not being met. 

• Establish information networks so that research can be coordinated and data on any progress in researching specific disabilities will be available. Link advocacy and support groups with the consumer. Organize treatment-oriented conferences so that effective new technology will be available to all persons with SCI, not just those in the region where it was developed. New information can be a catalyst for action. Present a rational policy, developed as a result of sound studies, to legislators for enactment into law. Establish standards of care, and license and accredit agencies to ensure that those who care for persons with SCI have the necessary resources to do so effectively. Develop mechanisms for retrieving and transferring information on surveillance and new technology. 

Psychosocial Secondary Disabilities 

Psychosocial factors are related to secondary disabilities in persons with spinal cord injury in two ways: as mediating factors for preventable medical complications (with implications regarding the cause and treatment of those complications) and as secondary disabilities that adversely affect the quality of life. Many of these psychosocial factors interact: they can be both a secondary disability and a mediating factor for health outcomes and quality of life. Accordingly, in the following discussion that distinction is important. In addition, a number of factors are highlighted that influence the development or severity of psychosocial secondary disabilities. Finally, recommendations relevant to surveillance, research, and roles for public health agencies are presented. 

Psychosocial Variables as Mediators of Medical Complications - Pressure ulcers may be the best example of the potential for psychosocial variables to be the mediators of medical complications after a spinal injury. A number of studies have attempted to verify variables associated with a person with SCI developing pressure ulcers. By and large, neurological variables (such as the level or extent of the spinal cord lesion) have not been useful predictors. Variables that have been shown to be related to developing pressure ulcers include age, number of persons in the home, verbal IQ, some psychosocial test subscales, and life satisfaction.(1)(2) Bed rest and surgery are not long-term solutions for pressure ulcers if the person remains depressed, has an uninteresting, restricted lifestyle, and has no hope of attaining greater life satisfaction. 

Studies of other physical complications of spinal cord injuries have shown similar results. As a complication of spinal injury, pain has been associated more with level of intelligence, problems in life, and particular Minnesota Multiphasic Personality Inventory (MMPI) subscales and less with physical or neurological variables.(3) Rehospitalization for medical complications has been associated with low education and long initial hospitalization,(4) as well as with both extremely active and extremely inactive lifestyles.95)(6) These facts illustrate the potential for psychosocial variables to be mediators in preventable and unpreventable complications of spinal cord injury. These findings certainly argue for the inclusion of such variables in studies of the etiology and treatment of these complications. 

Psychosocial Factors as Secondary Disabilities - The following were identified as the psychosocial complications of spinal cord injury most worth studying. 

Suicide - Results of three studies showed that the risk for suicide in the SCI population is five to seven times greater than that in an age-matched, able-bodied control group.(7)(8) Suicide accounts for 6.3% of deaths recorded in the National Spinal Cord Injury Statistical Center data base. Results of a recent analysis of that data set suggest that the highest risk occurs during the first 5 years after injury and that the risk is highest for persons with complete paraplegia, whites, and females. 

Self-neglect - Despite our best efforts at education, some persons with SCI often neglect their self-care, at times to the point of death. A study by Macleod determined a 9% prevalence rate for self-neglect and suggested three types of self-neglect: poor coping, depression, and suicide.(9) Self-neglect tends to be associated with preventable medical complications. 

Depression (Postdischarge) - Little longitudinal data exists on the prevalence and severity of depression in the population with SCI. In one study that compared an able-bodied group with a group with SCI immediately after the latter group’s first discharge from a rehabilitation hospitalization, higher scores on depression and hostility scales were noted for the SCI group. These differences, however, dissipated within 1 year.(10) In a recent Canadian study of persons with physical disabilities, a 35% prevalence rate was noted for major depression (DSM-III-R criteria); however, persons with SCI were not identified as a subgroup.(11) These appear to be the only findings available that reflect population-relevant prevalence rates of major depression for persons with physical disabilities. 

Drug and alcohol abuse - Drug and alcohol abuse can be the cause or result of disability or can be unrelated to it. Alcohol use has been cited as a contributing factor in a large percentage of spinal cord injuries. Rehabilitation hospitalization is, de facto, a substance abuse treatment for many persons with SCI. Many persons with SCI, however, who had a history of drug or alcohol abuse before injury begin abusing substances again after discharge.(12) No quantitative data are available on the relationship between drug or alcohol abuse and the development of medical complications following spinal injury. Several specialized treatment programs for persons with SCI who have drug or alcohol problems are available (Sister Kenney Institute, Shepherd Spinal Center, Veterans Administration-Long Beach, Abbott Northwestern), but no studies of outcome at these centers are available. 

Diminished life satisfaction - In their studies, Crewe and Krause found that life satisfaction for the population with SCI increased with time, suggesting that psychosocial adjustment and coping skills increase with experience.(13) Some evidence indicates that women, especially those with cervical lesions, may face more difficulties (increased divorce rate and lower rates of marriage or remarriage), but this subject needs further study. Krause and Crewe also found that long-term survival was related to higher levels of social and vocational activity during the early years after injury.(14) Life satisfaction is probably the key outcome measure for the person with SCI. Indeed, as Trieschmann asks, what good has been accomplished if all organ systems are intact and functioning, but the person with SCI cannot work, live, or socialize in a satisfying way?(15) 

Psychophysiological symptoms - Psychophysiological symptoms include fatigue, pain, sleep disturbance, and irritability. Is this a series of symptoms similar to those identified in the postpolio syndrome,(16) perhaps related to depression? Chronic pain remains a significant problem for 10% to 20% of the population with SCI, yet few controlled studies demonstrate the efficacy of particular interventions. 

Impaired productivity  - Vocational productivity is notably low in the population with SCI. Productivity in a larger sense has not been satisfactorily examined. Compared with persons without disabilities, to what extent do persons with SCI contribute to family and community life, apart from paid employment? 

Factors that may influence psychosocial secondary disabilities - The workgroup believes the following factors are potential mediating variables for the psychosocial disabilities discussed above. 

Minority status - One participant in the workgroup said she was told by a service provider, “Minorities are a waste of time.” Persons from minority groups who have a disability may well be subject to double discrimination. We do not know what additional demands are placed on the coping reserve of persons who have a double minority status or what the implications are for developing depression, despair, and preventable medical complications. A related question is whether minority persons with SCI have less family and community support. 

Aging - Treischmann reviewed the available information on the impact of aging on persons with SCI; she makes it clear that little systematic knowledge exists.(17) Increased pain, decreased functioning, threatened loss of independence, shrinking support systems, and increased costs that may be associated with aging presumably can lead to long-term stress and a greater likelihood of secondary disabilities. 

Gender - Differences in coping skills and role demands between men with SCI and women with SCI have been the subject of speculation but little systematic study. 

Level of general knowledge and education - These factors require study because they affect patients’ interest in learning and their ability to follow-through and comply with treatment strategies. They are especially important for persons with long-term SCI who are experiencing changes in their personal support systems. 

Appropriate transportation and housing - Accessible and affordable transportation and housing are minimal requirements for an adequate quality of life for persons with SCI. In their absence, risks of depression and despair, neglect, and preventable complications are likely to increase, although no studies have been done to test this hypothesis. 

Quality attendant care - For persons with SCI who need assistance with personal care, access to personal assistance is essential to meet their basic physical needs and to organize their daily activities in a manner that permits an active and productive life. Without this essential service, persons with SC! are unable to transcend their concerns about basic survival issues and are forced to accept a life of diminished expectations. Such a situation, in turn, can lead to further despair and various adverse health outcomes. Moreover, effective personal-care assistance is important in assisting persons with SCI to recognize and avert potential medical complications. 

Social support - How well persons with SCI cope depends importantly upon the tangible, emotional, and informational support they receive from other people. Little is known, however, about the needs of caregivers. What leads to “burnout”? When is “burnout” likely to happen? And what are its impacts on the health of persons with SCI? 

Financing - Many persons with SCI and the service providers upon whom they depend believe that the degree to which they can pay dictates the quality, quantity, and timing of health care and other services. Empirically verified analyses of this conviction, however, are largely unavailable. 

Access to appropriate postrehabilitation health care - A recent regional survey of people with multiple disabilities has shown that persons with SCI are likely to have difficulty finding a physician who is knowledgeable about their health care needs. The same survey found that persons with SCI are the most likely group of people with disabilities to experience a rehospitalization during any given 12-month period.(8) 

Societal attitudes - Few research-supported data exist regarding the degree to which persons with SCI participate in society and the degree to which their perception of themselves is affected by social attitudes that stigmatize persons with physical disabilities and influence people to view them as socially deviant or sick. 

Recommendations

Surveillance
• Develop a longitudinal, population-based surveillance system to determine the incidence, prevalence, etiology, and risk factors for handicap and diminished subjective well-being of persons with SC!. CDC should establish this surveillance system in a delimited geographic area and focus on psychosocial variables that take strongly into account individual perceptions and viewpoints. 

Research
• Encourage investigators who are studying the etiology and treatment of medical complications (i.e., secondary physical impairments) of persons with SCI to include in their studies ways to measure possible psychosocial mediating factors and societal barriers.

• Develop environmental and societal constraints on persons with SCI, focusing particularly on factors such as the adequacy of personal-care attendant services, transportation, housing, financial resources, public health services, and primary health care. Develop more tools and methods for defining and indexing these environmental characteristics.

• Fund longitudinal research where appropriate. Cross-sectional and “one-shot” designs are relatively unhelpful for assessing changes in psychosocial factors.

• Fund research that focuses on treatment outcomes that take psychosocial variables into account. Emphasize the use of appropriate control groups.

• Fund research on secondary disabilities that develop after the initial phase of rehabilitation is complete and the SCI person has left the hospital. Assess the long-run success of medical rehabilitation in teaching health maintenance skills that avert the preventable medical complications to which persons with SCI are especially susceptible.

• Encourage research on the psychological distress of persons with SCI as a function of environmental dysfunction rather than of personal dysfunction. Environmental dysfunction research is consistent with public health strategy, is less likely than personal dysfunction research to show results that blame the victims, and is more likely to lead to interventions with significant impacts.

• Fund community-based interventions designed to avert preventable adverse health conditions that add to the high rate of medical complications and rehospitalizations among persons with SCI. 

Role for Public Health Agencies

• Sponsor and evaluate model health-education and health-promotion projects for persons with SCI during the rehabilitation and postrehabilitation phases.

• Sponsor and evaluate education for health care providers, particularly primary care providers, on the ongoing health-care needs of persons with SCI. Show that timely assistance can prevent complications from becoming major medical and psychosocial problems.

• Sponsor model service demonstrations that involve collaboration between public health departments and community-based agencies (e.g., independent living centers) that are devoted to preventing secondary disabilities through advocacy and education.

• Develop empirically validated instructional material on preventing secondary disabilities in persons with SCI for distribution to consumers through public health and consumer organizations.

References 

1. Anderson TP, Andberg M. Psychosocial factors associated with pressure sores. Arch Phys Med Rehabil 1979;60:341-6.

2. Richards JS. Pressure ulcers in spinal cord injury: psychosocial correlates. SCI Digest 1981;3:11-18.

3. Richards JS. Psychosocial aspects of chronic pain in spinal cord injury. Pain 1980; 8:355-66.

4. Davidoff C, Schultz JS, Lieb T, et al. Rehospitalization after initial rehabilitation for acute spinal cord injury: incidence and risk factors. Arch Phys Med Rehabil1990;71:121-4.

5. DeJong G. Environmental accessibility and independent living outcomes: directions for disability policy and research. East Lansing, Michigan: Michigan State University, University Center for International Rehabilitation, 1981.

6. DeJong G, Branch LC, Corcoran P. Independent living outcomes in spinal cord injury: multivariate analyses. Arch Phys Med Rehabil 1984;65:66-73.

7. Brown PJ. Suicide in the spinal cord injury population. Arch Phys Med Rehabil 1988;69:702.

8. Charlifue SW, Butt L, Whiteneck G. Suicide following spinal cord injury: what are the clues? Arch Phys Med Rehabil 1988;69:703.

9. Macleod AD. Self-neglect of spinal injured patients. Paraplegia 1988;26:340-9.

10. Richards JS. Psychologic adjustment to spinal cord injury during first postdischarge year. Arch Phys Med Rehabil 1986;67:362-5.

11. Turner RJ, Noh S. Physical disability and depression: a longitudinal analysis. J Health Soc Behav 1988;29:23-37.

12. Heinemann A, Donohue R, Keen M, Schnoll S. Alcohol use by persons with recent spinal cord injuries. Arch Phys Med Rehabil 1988;69:619-24.

13. Crewe N, Krause JS. An eleven-year follow-up of adjustments to spinal cord injury. Rehabil Psychol, in press, 1991.

14. Krause J, Crewe N. C Prediction of long-term survival of persons with spinal cord injury: an 11-year prospective study. Rehabil Psychol 1987;32:205-13.

15. Trieschmann R. Spinal cord injuries: the psychological, social, and vocational adjustment. New York: Demos, 1988.

16. Frick N, Bruno R. Post-polio sequelae: physiological and psychological overview. Rehabil Literature 1986;47:5.

17. Treischmann R.  Spinal cord injuries: aging with a disability. New York: Demos, 1987.

18. Batavia A, DeJong G, Burns T, Smith Q, Melus S, Butler D. A managed care program for working-age persons with physical disabilities: a feasibility study. Washington, D.C.: National Rehabilitation Hospital Research Center, 1989. 

Skin-Related Secondary Disabilities 

Case Definition Pressure sores are a common problem in persons with spinal cord injury, and they cause frequent disruptions in routine life activities. One participant scheduled to attend this session was unable to come because of a pressure sore. Because all people with SCI are at lifelong risk of developing pressure sores, prevention strategies to reduce the incidence of pressure sores are needed. Many risk factors for pressure sores have been identified along with possible areas for intervention. 

Although no consensus exists in the medical and scientific literature on the appropriate terminology for skin breakdown in persons with spinal cord injury, the workgroup settled on pressure sore. Classifying pressure sores by severity from grades Ito IV (similar to degrees used to classify bums) works well for clinical purposes; however, if longitudinal studies are undertaken, clearer case definitions will be needed. 

Epidemiology Little is known about the epidemiology of pressure sores or about the relationship between pressure sores and the number of years a person has had spinal injury. Adequate studies have not been done to determine who is at highest risk for pressure sores, and there is little basic information, such as incidence and prevalence data, about clinically important risk factors. More than 260 risk factors for pressure sores have been identified. Because few long-term studies of the risk factors for pressures sores have been undertaken, the relative importance of each factor is unknown. 

Surgical and medical acute-care procedures to treat pressure sores have been evaluated. The efficacy of other therapies, such as use of various devices, has not been determined. Well-designed studies to evaluate the efficacy of therapeutic procedures and devices are needed. How forced early discharge from acute and rehabilitative care affects the occurrence of pressure sores is not known. Early discharge may influence adversely the effectiveness of treatment and patient education for skin care. 

Because the relative impact of identified risk factors is unknown and few well-designed long-term studies have been done, funding for pressure-sore research is essential. Available data (such as those from the Model Systems and from other studies) should be analyzed. 

Costs Pressure sores have direct and indirect costs. Direct costs are for treatment, and they are determined by the severity of the pressure sore, whether hospitalization or surgery is needed, and the costs of the assistive devices needed. Indirect costs, such as those associated with the loss of independence and self-esteem, and the loss of employment by the SCI person or by a family member are more difficult to measure. 

Current estimates of costs range from $15,000 to $70,000 per pressure sore. These estimates, however, may not reflect costs directly related to the pressure sore. A recently published study placed the actual cost at $1,300 per sore. (1)  A study now under way, “The Economic Consequences of Spinal Cord Injury,” supported by the Paralyzed Veterans of America, will define the costs associated with pressure ‘ores better. 

Hospital reimbursement by insurance companies for pressure sore treatment is inadequate. Because hospitals may lose money on treatment, modified treatment programs have emerged. The impact of these new patterns of care is not known. It is also not known whether prevention programs for pressure sores are cost-effective — that is, whether treatment costs are reduced because of prevention activities. If effective, however, prevention programs will improve the quality of life for persons with SCI and are therefore a worthy goal. 

Prevention -  Present approaches to preventing pressure sores all involve education: persons with SCI, rehabilitation specialists, primary care providers, home health care providers, family caregivers, and personal-care attendants are taught strategies to prevent pressure sores from developing. Persons with SCI are also given psychological support to encourage them to comply long-term with these prevention strategies. 

Although few follow-up education programs exist for patients, they are essential. Public health officials should assess the quality of educational programs, the quality of educators, and the level of access to education. They should also evaluate education programs. 

Because of the diversity of learning styles among persons with SCI, many educational avenues should be made available. Additional funding is needed to develop educational programs and to evaluate the efficacy of these programs. 

Recommendations 

Research
• Conduct longitudinal studies of the incidence and prevalence of pressure sores. Address the relative importance of each risk factor and how to translate the knowledge acquired into predictions of risk for each person with SCI.

• Evaluate the effectiveness of various prevention and treatment therapies for skin complications.

• Study tissue physiology to define characteristics of normal and wound tissue. Address basic questions such as, What tissue is at risk for developing pressure sores and how can tissue be treated to prevent pressure sores?

• Determine which behavioral factors cause skin complications and devise strategies to modify those behaviors.

• Assess how acceptable various programs to prevent skin complications are to persons with SCI.

• Conduct studies of devices to prevent skin complications.

• Identify barriers that deny persons with SCI access to the health care delivery system and that therefore increase their likelihood of developing pressure sores.

Role of Public Health

• Improve licensing standards for health care facilities (acute care, rehabilitation, and long-term care).

• Conduct cooperative epidemiologic studies.

Reference

1. Alterescu V. The financial costs of in patient pressure ulcers to an acute care facility. Decubitus 1989;3:14-23.

ABSTRACTS FROM THE WORKGROUP PRESENTATIONS

Functional Electrical Stimulation and Cardiovascular Health by Kristjan T. Ragnarsson, M.D., Mt. Sinai Medical Center, New York, New York

Research has documented that cardiopulmonary fitness is reduced by spinal cord injury. Total muscle mass used for voluntary exercise is reduced severely and is not adequate to produce the cardiovascular stress needed to maintain or improve fitness. Voluntary control of muscle mass is limited to the upper extremities and the trunk in paraplegics and often only to a small part of the upper extremities—the shoulders and neck—in quadriplegics. Even in nondisabled people upper extremity endurance exercises are known to be less efficient than lower extremity exercises in producing the cardiovascular stress necessary to improve fitness. Scientists speculate that the frequent complaints of fatigue and poor general endurance after spinal cord injury may be related to cardiovascular fitness. Lack of lower extremity muscle activity may also contribute to poor venous return and impaired fibrolytic activity. 

Even when muscles are paralyzed by upper motor neuron lesions, significant visible disuse atrophy of muscles occurs due to loss of maximum contraction strength and endurance upon stimulation. This atrophy is associated with certain histochemical changes within the muscles—i.e., preponderance of Type II muscle fibers (fast, anaerobic) over Type I (slow, aerobic) and reduction in mitochondria concentration, oxidative enzyme level, and number of capillaries. 

To improve physical fitness, general health, and prospects for longevity, regular aerobic exercise, a proper diet, and abstinence from smoking have been recommended. Endurance exercise that activates the largest muscle mass—such as the lower limbs—is the optimal form of exercise for cardiovascular fitness in the general population. Most persons with spinal cord injuries, however, cannot use their lower limbs except by means of electrical neuromuscular stimulation, if the lower motor neuron is intact. A combination of upper and lower limb exercise may be even more effective. But the inability of these persons to sustain high work output may limit the health benefits of endurance exercise (although recent reports indicate that, for nondisabled individuals, significant health benefits can be obtained with only a relatively small amount of regularly performed exercise). Further investigations are required to demonstrate if endurance exercise—voluntary upper limb exercises or electrically induced lower extremity exercises—are cost effective in their impact on such variables as lipid metabolism, cholesterol/high-density lipoprotein ratio, general health, functional performance, quality of life, morbidity, and life expectancy. 

The Acute and Chronic Effects of Physical Activity on Lipoprotein Cholesterol in Spinal Cord Injury by Gilbert Brenes, M.D., Harmarville Rehabilitation Center, Pittsburgh, Pennsylvania. 

Medical advances in the acute management of spinal cord injury over the past 10 years have reduced earls- mortality, resulting in a substantial increase in life expectancy. Paradoxically, this increase has made cardiovascular disease a major cause of death in the spinal cord-injured (SCI) population. One contributing factor is this group’s extraordinarily low level of physical activity, which, along with cigarette smoking, hypertension, and obesity, has been linked to coronary heart disease (CHD). One of the factors that link physical activity to CHD is the concentrations of high-density lipoprotein cholesterol (HDLc) and its sub fractions HDL2 and HDL3. Low HDLc levels are associated with an increased risk of heart disease. Low serum concentrations of the sub fraction HDL2 are strongly associated with increased CHD risk among able-bodied persons. The HDL3 sub fraction has no clear relationship to CHD. 

Over the past eight years, the author and his colleagues have examined the acute and chronic effects of physical activity on HDLc metabolism in persons with SCI. Research examined changes in total cholesterol, HDLc, and triglycerides on 66 consecutive admissions to a rehabilitation center. The sample consisted of patients with acute (n = 18) and chronic (n=48) conditions. 

Cross-sectional comparisons for all hb cases show a significant positive correlation between time since injury and total HDLc, especially where lipid values were examined in patients less that six weeks post injury, 7-52 weeks post injury, and more than one year post injury. No significant differences were observed between quadriplegic and paraplegic patients. Females (n = 10), as expected, had significantly higher HDLc concentrations than did males. 

When the sedentary SCI population was contrasted with highly trained SCI athletes, significantly higher HDLC levels were observed in the latter group. Those higher levels were due primarily to increases in the HDL2 sub fraction, which is reported to have antiatherogenic properties.  

Researchers also examined the acute effects of exercise on HDL sub fractions among persons with SCI using lower-extremity computerized functional electrical stimulation (FES). The subjects engaged in FES two to three times per week for a maximum of 30 minutes per session. Blood samples drawn before training began, immediately before and after the final training session, and at a follow-up 6 to 8 weeks later showed a nonsignificant acute increase in total HDLc for all subjects and a significant acute increase in HDL3 (which apparently returned to baseline levels before each exercise session). HDL2 declined, though not significantly. Relatively no chronic changes in any of the three lipid parameters were observed. It appears that this training regimen was not sufficient in frequency, intensity, or duration to affect an increase in total HDLc or HDL2. Smoking, alcohol, or medications may also have confounded the findings. 

Pulmonary Complication Prevention Strategies by Augusta Alba, M.D., Goldwater Memorial Hospital, New York, New York. 

In the acute-care hospital: Following a thorough assessment of the pulmonary lesion, the pattern of respiratory muscle weakness should be identified. The diaphragm can be evaluated by fluoroscopy or by supine full inspiration or forced expiration x rays. Function of the intercostals, abdominals, and accessory breathing muscles can be evaluated by physical examination. 

All personnel must recognize the complications caused by the inability to cough. Intensive-care unit nurses, respiratory therapists, and physical therapists must all have training and take the time to assist the patient in simulated coughing, other chest physical therapy techniques, and postural drainage. The pulmonologist must be skilled in caring for patients with neuromuscular disability. Additionally, respiratory rehabilitation, including mobilization of the patient, can be tragically delayed by decubiti if the ventilator-dependent quadriplegic is not given scrupulous skin care and proper support surfaces during initial hospitalization. 

In the inpatient rehabilitation center: Rehabilitation personnel must have access to assessments made during acute care, and they must continue the techniques begun in that setting. The staff should recognize patterns of respiratory muscle weakness and fatigue; they must be trained to maximize respiratory muscle strength in both formal therapy sessions and at the bedside. All staff should be able to interpret the significance of decreased vital capacity, decreased tidal volume, and increased respiratory rate, and they should recognize the use of accessory muscles and the inability to cough. They must understand the effect of position on pulmonary function. Inspiratory resistance breathing with the use of either airway resistance or sandbags on the body and progressively deeper insufflations with ventilator equipment must be practiced. The staff must recognize the complications secondary to tracheostomy, especialIy tracheomalacia and tracheal stenosis. Choices for noninvasive forms of ventilatory assistance must be given to the patient: iron lung or port-a-lung, chest shell, poncho, pneumobelt, and airway positive pressure ventilation via oral/nasal interfaces. Speech pathologists must be thoroughly trained in the management of dysphagia, dysarthria, and augmentative communication. Occupational therapists and orthotists must provide support equipment to maintain erect body posture. 

In the after-care setting: The role of the non-licensed personal caregiver should be clearly defined. The person, with appropriate training, should be permitted to suction the nasopharynx and the stable tracheostomy, provide tracheostomy care, and adjust the portable ventilator under the patient’s direction. Chronic alveolar hypoventilation can develop insidiously with the patient at home. The patient either may have been weaned from the ventilator or may be using it for an insufficient time. Crowded areas, exposure to anyone with an upper-respiratory tract infection, sedatives, heavy meals, and extremes of temperature and humidity must be avoided. Appropriate flu and bacterial vaccinations must be given. 

Surgical Management of the Neurogenic Bladder by Inder Perkash, M.D., Spinal Cord Injury Service, Veterans Administration Medical Center, Stanford, California 

Neurologic damage to the spinal cord above the conus leads to detrusor sphincter dyssynergia and, invariably, to detrusor hyperreflexia. Elevated intravesical pressures lead to bladder trabeculation, vesicoureteral reflex repeated bladder infections, pyelonephritis, and kidney stones. Nonsurgical bladder drainage is accomplished either through intermittent catheterization or through a suprapubic tube. Transurethral sphincterotomy relieves obstruction due to detrusor sphincter dyssynergia, and this reduces voiding intravesical pressures. 

Recent studies on intermittent catheterization, even within the first 26 months post injury, indicate that the incidence of trabeculation varies from 25% to 54%; that of vesicoureteral reflux, from 13% to 20%; and that of hydronephrosis. from 5% to 7%; the incidence of stone disease was about 7% and that of pyelonephritis, about 11%. Most complications were reported in male patients with supraconal lesions. Another review indicates a 72% recurrence of stone disease within 2 years. Most renal calculi (98%) in spinal cord-injured patients are struvite, with varying amounts of carbonate apatite usually due to urologic infection resulting from urea-splitting organisms. The cost of treating renal calculi is approximately $16,000 in 1986 dollars. Cross-analysis studies show that those who had an external sphincterotomy were more likely to be free from catheters and also less needful of litholapaxy.  

The author’s review of 93 patients - 46 on an intermittent catheterization program (ICP), 25 with indwelling Foley catheters, 15 with suprapubic catheters, and 7 others who changed from ICP to Foley to suprapubic tubes— indicates the following incident rates: renal lithiasis, 14; bladder stones, 16; hydronephrosis, 5; epididymorchitis, 7; vesicoureteral refluxes, 5; penoscrotal fistulae, 4; and significant reduction in renal function, 9.  

In a recent 5 year follow-up study of 36 patients with clean ICP, the following incident rates were observed: 36% showed development of secondary bladder neck obstruction due to bladder neck ledge; 11% developed diverticula; 8% had stones; 3% had epididymitis; 3% had false passage; 6% showed vesicoureteral reflux; and 8% showed minimal hydronephrosis. These complications were seen less often in patients following transurethral sphincterotomy and condom drainage. 

Nursing GU/Bowel Complications by Marilyn Pires, R.N., M.S., C.R.R.N., Rancho Los Amigos Medical Center, Downey, California. 

Of all the manifestations of spinal cord injury, alterations in bowel and bladder elimination have the highest potential to negate the rehabilitation goal of community reintegration. The possibility of public exposure of one’s excretory functions is repugnant to society as well as to the person with spinal cord injury. 

Bowel: With spinal cord injury, the sensation of rectal fullness and the ability to voluntarily relax or contract the external sphincter is lost. Bowel elimination is managed by establishing a predictable elimination pattern. Two types of neurogenic bowel dysfunction are seen after spinal cord injury: reflex and autonomous. Management programs for both types consist of variations in the use of rectal suppositories, digital stimulation, manual removal, and valsalva maneuvering. Other important considerations in establishing an elimination pattern are consistent physical exercise, high fluid intake, high-fiber foods, consistent elimination time, positioning, interabdominal pressure, and oral medications. Common complications include constipation, impaction, diarrhea, autonomic dysreflexia, paralytic ileus, involuntary bowel movements, hemorrhoids, anal fissures, and skin excoriation. 

Bladder: The sensation of bladder fullness and the ability to voluntarily control the urinary sphincters is also lost among spinal cord injury patients. Management considerations include urethral and suprapubic catheters, intermittent catheterization, voiding versus nonvoiding programs, clean versus sterile technique, use of external urinary collection devices, ileal diversion, and continent ileal diversion.  

Common complications include recurrent urinary tract infection, damage to the upper urinary tract, urethral pathology, autonomic dysreflexia, epididymitis, skin excoriation, and interference with sexual performance. Health care professionals often attribute the development of complications after discharge to patient noncompliance.  

Adaptation to spinal cord injury becomes the lifework of injured persons after discharge. Persons with spinal cord injury must learn to manage medical crises, manage prescribed regimens, and establish a satisfying lifestyle. They are often expected to accomplish all of this with limited or no resources and or support. There may be great disparity between prescribed regimens and what the person with spinal cord injury can practically integrate into his or her life. It may be necessary for the rehabilitation team to develop a decision tree to assist the patient in making the most therapeutic decisions for his or her particular situation rather than to discharge the patient with unrealistic expectations. 

Epidemiology and Importance of Urinary Tract Infections by Ken Waites, M.D., Spain Rehabilitation Center, Birmingham, Alabama. 

The potential for bacterial invasion of the urinary tract begins immediately after spinal cord injury when management of spinal shock with a noncontractile bladder requires catheterization for urinary drainage. Urologic complications secondary to chronic or recurring urinary tract infection (UTI) continue to be a prominent cause of concern and morbidity following injury, irrespective of the bladder-emptying method. UTI may prolong initial hospitalization and interfere with educational, vocational, and rehabilitation plans. Secondary complications of infection, which include septicemia, urinary calculi, epididymitis, vesicoureteral reflux, perinephric abscess, and renal failure, can result in repeated hospitalizations over many years at tremendous costs to the patient as well as to the health care system and society in general. 

The epidemiology of UTI following spinal cord injury and, indeed, the role of chronic or recurrent bacteriuria in the pathogenesis of long-term urinary tract complications are unclear. This lack of knowledge is due at least partially to the frequency of asymptomatic infections, inherent difficulties in case definitions and diagnosis, and the localization of infection. 

A retrospective analysis of 1,105 unselected annual spinal cord injury outpatient evaluations performed at the University of Alabama at Birmingham SCI Clinic between 1985 and 1988 on patients without indwelling urinary catheters showed that 24.7% of patients had sterile urine; 22.9% had bacterial counts <100,000/mI; 32.7% had single organisms >100,000/mi; and 19.7% had polymicrobial infections >100,000/ml. A prospective study was begun at the same clinic in October 1988 to better delineate the incidence, predisposing factors, bacteriology, efficacy of therapeutic interventions, and overall costs related to UTI following spinal cord injury.  

Participants are evaluated monthly for one year in their homes by a public health nurse who conducts a physical examination and urinalysis and obtains a history and quantitative urine culture. Bladder management techniques, precautions taken to prevent UTI and pressure ulcers, as well as patient compliance with instructions are assessed during each visit. Patients must take an active role in their urologic care by collecting their own urine specimens, recording the weekly leukocyte readings using urine dipsticks, and inoculating an agar dipslide and mailing it to the university’s laboratory, where it is incubated and read. Persons who have >100,000 colonies/ml and pyuria ( >10 leukocytes/hpf urine) are treated for 14 days with an appropriate antibiotic. New or relapsing infections are treated with a 30-day course of therapy. The patient is not treated further unless UTI symptoms, such as fever and chills, occur. 

Upon completion of this study, researchers can determine the following: how frequently participants are infected during a 12-month period; whether infection can be eradicated and for how long; effects of the antibiotics on the development of resistant strains of bacteria; whether participants’ varying personal habits or practices may affect the number and or duration of infection episodes; overall costs of diagnosis and treatment; and the incidence of pressure ulcers. 

Infertility in Spinal Cord Injured Males: Challenges Met and Yet to be Met, by Todd A. Linsenmeyer, M.D., Kessler Institute for Rehabilitation, West Orange, New Jersey 

The two major reasons for spinal cord-injured (SCI) male infertility are poor semen quality and ejaculatory dysfunction. Causative factors of poor semen quality include recurrent urinary tract infections, testicular hyperthermia, stasis of prostatic fluid, abnormal testicular pathology, contamination with urine, possible changes in hypothalamic pituitary testicular axis, possible sperm antibodies, and possible chronic medication use. The type of bladder management also appears to be important. One study noted that sperm motility following electroejaculation was best in those who managed their bladders with intermittent catheterization or had a sphincterotomy. Those with the poorest motility used indwelling Foley catheters or high-pressure “reflex” voiding.  

There is little information, however, concerning which of these factors is most important or how the various factors interrelate. In another study, incidence of ejaculatory dysfunction ranged from 0% to 7% in patients with complete lesions and 27% to 32% for those with incomplete lesions—despite indications that erection can be maintained in about 70% of SCI males. Ejaculation rates may actually be higher than reported in the study, but the rates are difficult to document because semen may flow in a retrograde manner into the bladder. Factors influencing retrograde ejaculation may include decreased adrenergic stimulation of the bladder neck, striated sphincter-detrusor dyssynergia, or surgery to the bladderneck or external sphincter. 

Methods used to obtain ejaculate for artificial insemination include subcutaneous physostigmine, aspiration of the vas deferens, electrovibration, and electroejaculation. Intrathecal neostigmine is no longer used because of associated severe autonomic dysreflexia. Electrovibration and electroejaculation are the methods most commonly used to obtain ejaculation. Brindlev, a British investigator, reported success in 48 of 81 paraplegic men using vibratory stimulation. The patients were taught how to inseminate their wives using a 5-cc syringe. Seven pregnancies were achieved.  

Vibratory stimulation has not been widely used in the United States, where the most common method is electroejaculation. Currently, semen can be retrieved in more than 50% of quadriplegic males and in 67% to 73% of paraplegic males. Despite its increasing popularity, however, there are some disadvantages to electroejaculation. It is impersonal, since it is performed in a physician’s office and requires one to two assistants. And some attributes of the procedure itself—electric current, increased or decreased osmolarity, and the aqueous jelly containing phenyl mercuric borate used for catheterization—can adversely affect sperm motility. Additionally, in those with incomplete lesions, the stimulating current may cause enough discomfort that the procedure must be stopped. 

Future challenges will include finding ways to prevent semen quality from deteriorating following injury, delineating the impact of various factors responsible for causing poor semen quality, defining the etiology of abnormal testicular histology, and conducting research on improving sperm motility. Consideration should be given to the use of various assisted reproductive technologies (such as in vitro fertilization-embryo transfer, or IVF-ET, and gamete intrafallopian transfer, or GIFT). In addition, the patient’s female partner should be carefully evaluated. More emphasis should be placed on developing spinal cord injury reproductive teams composed of, at a minimum, a urologist, a spinal cord-injury psychiatrist, and an obstetrician. 

Regarding ejaculatory dysfunction, efforts should continue to make electroejaculation less impersonal. Equipment used for vibratory stimulation should be critically evaluated, and medications that induce ejaculations without the side effects of severe autonomic dysreflexia should be developed. Work to develop effective pharmacological and or mechanical methods to prevent retrograde ejaculations should also be considered. 

Heterotopic Ossification Following Spinal Cord Injury by Samuel L. Stover, M.D., Spain Rehabilitation Center, Birmingham, Alabama. 

In people with spinal cord injuries, heterotopic ossification occurs most frequently around joints adjacent to long bones. It has a widely reported incidence—usually between 16% and 53% of all persons with SCI. It occurs with equal frequency in males and females, is equal bilaterally, and is always below the level of neurologic impairment. Its causes are unknown. There is little understanding of why incidence seems to have certain geographic and cyclical characteristics. 

In many patients, heterotopic ossification is a coincidental X ray finding, and there is no clinical evidence the bone is forming. In the most severe cases, however, it occurs rather suddenly with a swollen extremity, possibly with heat and redness, and a low-grade fever. It occurs most commonly about 1 to 4 months after injury. X rays are usually negative for 7-10 days after the clinical signs and symptoms appear and then begin to show small amounts of flocculent calcification. The differential diagnosis must include heterotopic ossification, deep venous thrombosis, cellulitis, joint sepsis, hematoma, fracture, and trauma. 

If heterotopic ossification has a late onset—for instance, more than one year after injury—other causes may induce the bone formation. The most frequent cause is infection, either localized or more generalized. Other causes may include a severe systemic illness and/or surgery in a local or distant location. Treatment is usually prevention of ossification or surgical resection of the heterotopic bone. Calcitonin, diathermy, and ultrasound have not been effective in preventing ossification, Anti-inflammatory agents such as indomethacin and ibuprofen have been to prevent heterotopic ossification following total hip replace-as has radiation therapy. Etidronate disodium has some proven in preventing heterotopic ossification in persons with SCI, and there are mixed reports of its benefits after total hip replacement. Passive joint range of motion exercises are encouraged to maintain a pseudoarthrosis that will allow continued joint motion. 

In most persons with SCI, heterotopic ossification causes no recognized clinical problems; however, in about 10% to 15%, there can be some restriction of joint range of motion. In about 2%-3%, surgery should be considered if joint motion is so limited that it interferes with daily living activities or leads to abnormal pressure distribution that causes pressure ulcers. Recurrence of heterotopic bone following surgery has been a frequent problem. It has been suggested that recurrence is prevented if the heterotopic ossification is allowed to mature before surgery. The problem is that there are no accurate methods to determine maturity. Some evidence of immaturity may be present for many years. 

When surgery is indicated, a surgical wedge resection should be performed to gain adequate joint motion without an attempt to resect the entire heterotopic mass. The most frequent complications include excessive bleeding, infection, and the recurrence of heterotopic hone. A broad-spectrum, postoperative antibiotic should be used for 2 to 3 weeks following surgery; careful attention to hemostasis at the time of surgery is important, and suction drainage should be used for a few days postoperatively. 

All efforts to prevent the initial occurrence of heterotopic ossification should be made. Prophylactic use of etidronate disodium or indomethacm should be considered; these drugs should be started 2 to 3 weeks after injury. After 3 months, if there is no sign of heterotopic ossification, etidronate disodium can be stopped, but if the patient had leg swelling and a positive bone scan, the drug should be continued for at least one year. 

Because recurrence after surgical wedge resection is a major problem, etidronate disodium started 2 weeks postoperatively, indomethacin, or radiation therapy should be considered, in some cases all three therapeutic agents may be needed.

Neurological Recovery/Loss by Ralph I. Marino, M.D., Thomas Jefferson University Hospital, Philadelphia, Pennsylvania. 

Neurological secondary disability after spinal cord injury is defined as loss of function due to weakness that occurs because of failure to treat the initial injury appropriately or failure to maintain strength. It does not include weakness from a second injury or weakness from the initial injury, but it may include failure to improve from treatment of the initial injury when improvement is expected. The incidence of secondary disability due to weakness is unknown, but it is probably high in the population at risk. 

We know that almost all spinal cord-injured (SCI) patients get stronger at the zone of injury during recovery. Exercise contributes to this increased strength. Strength correlates with function, although not equally. During initial hospitalization, several factors may limit functional recovery—for example, inadequate or inappropriate treatment regimens, medical or surgical complications that limit participation in therapy, and the development of spasticity. The role of depression and patient compliance to the therapy program needs to he defined. After discharge, other factors become important. A significant risk factor for weakness may be the failure to maintain a strengthening program post discharge. Immobilization results in a decrease in strength of 1%-3% per day. Frequent hospitalization with resultant inactivity will lead to loss of strength and risk of the loss of function in marginal area. Poor follow-up can result in more significant complications and the failure to detect early weakness. Inadequate equipment or community services and support reduce activity and result in the loss of function gained during rehabilitation. Weakness is multifactorial—urosepsis can increase spasticity, decrease mobility, and result in a significant loss of strength and function after recovery. 

A monitored exercise program has been shown to be effective in improving strength in many populations; unmonitored programs can be detrimental. The efficacy of other popular treatments such as functional electrical stimulation (FF~) and biofeedback has not been demonstrated in long-term, well-controlled studies. Epidemiologic studies on the course of recovery are needed. Research to relate function to strength, sensation, and spasticitv is desired. Controlled studies on conventional exercise, FES, and biofeedback need to be done to answer to the following questions: 

1. Do they result in improved strength and function?

2. Are improvements maintained after treatments are discontinued?

3. Are these interventions more effective than conventional methods?

4. Are they cost-effective? 

Future studies need rigorous design and uniform definition of the level and the extent of injury and the time from injury. The lack of uniformity in current studies and in the natural course of recovery makes it difficult to compare results from different centers. 

Musculoskeletal Complications in Spinal Cord-Injured Patients by Robert L. Waters, M.D., Regional Spinal Cord Injury Care System of Southern California, Downey, California. 

Upper extremity pain resulting from degenerative musculoskeletal disease is a significant complication that limits function in both paraplegics and quadriplegics using wheelchairs or crutches. Late complications from weight-bearing on the arms during transfers and wheelchair/crutch locomotion result in numerous overuse syndromes and accelerate upper-extremity joint and tendon degeneration. Incidence of pain and decreased function increases with time from injury—21% of patients followed less than 10 years after injury reported upper-extremity pain requiring medication and/or limited function; the rate increased to 34% for those followed for more than 10 years. 

The shoulder is the most common site of joint pain. Carpal tunnel syndrome wrist pain is the most common site of pain among paraplegics. More than 75% of paraplegic patients followed more than 10 years post injury have clinical evidence of median nerve dysfunction. 

Autonomic dysfunction generally parallels the loss of sensory/motor function in the limbs and can lead to alterations of blood flow, temperature, vasomotor control, and localized osteoporosis. Edema predisposes to contractures and limited finger motion. Joint contractures can restrict function in both acute and chronic patients. Pressure sores are a frequent further complication of severe contractures. 

Following injury, there is an increased incidence of intervertebral disc degeneration in the cervical spine at uninjured intervertebral disc spaces above and below injured vertebrae. In a group of patients followed an average of 15 years since injury, flexion-extension of the cervical spine was 50% of the normal limit and rotation was 80% of the normal limit; 96% of the patients had degeneration at uninjured levels above the site of injury or surgical fusion manifested by osteophytes and/or disc narrowing. Most complained of intermittent or mild pain. In the lumbar spine, there is a similar increased incidence of intervertebral disc degeneration in normal discs below the level of injury. 

Osteoporosis is a universal occurrence associated with severe paralysis. Recent evidence that suggests paralysis and the absence of loads on the bones are the principal causes. Measurement of total bone mineral (TBM) by dual beam photometry indicates no difference in the cranial TBM of normal, complete paraplegic, and complete quadriplegic males of the same age. The TBM level for complete paraplegics’ upper extremities is within normal limits; however, the TBM level for complete quadriplegics’ upper extremities is significantly below normal. And the IBM level for the lower extremities of both complete paraplegics and quadriplegics is well below normal and essentially equal. Of particular significance, most of the decrease in TBM occurs in the first 4 months following injury. 

Heterotopic ossification surrounding joints most commonly occurs within the first 9 months after injury and is most often seen about the hip joints of complete paraplegic patients. Resulting loss of hip motion may interfere with sitting. Although pharmacotherapeutic agents can block calcification, their long-term clinical effectiveness is uncertain; surgical excision of heterotopic bone is associated with high rates of recurrence. Loss of muscle strength normally occurs with age; a particular concern with older spinal cord-injured patients is the further loss of strength. Muscular weakness, fatigue, and loss of function can be observed in older patients with spinal cord injuries. These symptoms are analogous to those seen in post polio syndrome. 

Community-based Support Services  and Their Impact on the Incidence of Secondary Disabilities in Persons with a Spinal Cord Injury by Charles Tubre, Louisiana Department of Health, New Orleans, Louisiana. 

Understanding the role of three fundamental community-based support systems and their influence on the incidence of secondary disabilities—medical, physical, or emotional—in the spinal cord-injured (SCI) population is essential to developing comprehensive secondary disability prevention strategies. These community-based support systems are personal care assistance, accessible and affordable housing, and special transportation services. 

Many persons with SCI, especially those with severe cord injuries, cannot accomplish the basic activities of daily living, such as dressing and undressing, bathing, grooming, moving into and out of bed, and toileting, without assistance. Without well trained, consumer-directed personal care services at the community level, persons with SCI are likely to be institutionalized. If the individual remains in the community without a reliable, informed personal care assistance support system, secondary complications such as urinary tract infections, decubiti, social isolation, and psychological disorders are more likely. 

An accessible and functional residential environment promotes the maximum level of independent function, with enhanced safety and ease of daily living activities. Barrier-free housing enables safe assisted and unassisted residential ingress and egress and promotes disabled persons’ integration into their neighborhoods. Such an environment supports a positive mental outlook. 

Lack of or inadequate special transportation services can be a barrier to accessing available medical services. Transportation services are often difficult to schedule, requiring requests well in advance of need. This acts as a disincentive to seeking timely intervention for non-acute medical problems. Transportation barriers also promote social isolation, possibly resulting in depression or substance abuse, or both. 

Life Satisfaction Survey by Nancy M. Crewe, Ph.D., Michigan State University, Lansing, Michigan. 

Identifying the secondary psychosocial disabilities related to spinal cord injury is surprisingly complex, particularly if the goal is to pinpoint the problems that are caused by these injuries. One reason is that most studies of psychological or social variables are descriptive and do not provide comparison figures for control groups from either the general population or those with other disabilities. Mans’ are also correlational— for example, they c\amine the correlation between level of injury and rate of employment. But a significant correlation does not prove causation, however tempting that speculation might be. As a result, studies sometimes claim to discover the effects of injury, but the evidence does not withstand scientific scrutiny. A second, related source of error stems from our confidence that we know a great deal about the ways in which life experiences affect people, leading us to accept too readily assertions that fit those expectations. A third is that any psychosocial problems would occur as a result of a complex, interrelated series of events, not the isolated fact of injury. 

However, even with these pitfalls and uncertainties, we do know something about life after spinal cord injury. Along with my colleagues, I began a study of 258 persons with spinal cord injuries in 1974, with follow-ups in 1985 and 1989. 

The most impressive and consistent finding of this study is that most participants reported a high degree of satisfaction with their lives and rated their personal adjustment as “very good.” They also were asked to rate their levels of satisfaction in specific areas; mean scores ranged from “neutral” with respect to sex life to a point between “satisfied” and “very satisfied” with respect to living arrangements. Ranked in between those two extremes (in ascending order of satisfaction) were finances, employment, general health, and social life. The studies show a moderate tendency for life satisfaction and adjustment to correlate negatively with age, although both are positively related to duration of disability. Individuals who appear to have the most difficulty adapting to life with spinal cord injury are those who are middle-aged or older at the time of injury. 

Alcohol and Other Drug Abuse by Allen W. Heinemann, Ph.D., Rehabilitation Institute of Chicago, Chicago, Illinois. 

The prevalence of alcohol-related problems among persons who incur traumatic spinal cord injuries resulting in permanent physical disabilities has emerged as a salient issue in physical medicine and rehabilitation. Alcohol abuse can contribute to the onset of disability, undermine the rehabilitation process by impairing learning, and limit rehabilitation outcomes by contributing to increased morbidity. 

Impaired judgment resulting from intoxication appears to be responsible for the risk-taking that results in many spinal cord injuries. At our acute spinal cord injury center, of 88 patients at admission, 40% had a serum ethanol level of greater than 50 mg/dl; 14% showed urinalysis evidence of cocaine; 8%, of cannabinoids; 5%, of benzodiazipines; and 4%, of opiates. In the same study, substance use histories were obtained from 103 persons with recent spinal cord injury. Lifetime exposure to and recent use of several substances with abuse potential were greater than for a like-age national sample. The rate of exposure to and recent use of drugs was significantly greater for persons who reported intoxication at injury. These results suggest intoxication at injury onset is a marker of preinjury substance use, and it is important to screen for substance abuse in traumatically injured persons. 

In a separate study of 96 persons with long-term SCI, 24% reported using one or more prescription medications on one or more occasions. Persons who regularly used prescription drugs were less accepting of their disability and more depressed than those who did not use prescription medications. Seventy-one percent of participants reported experiencing one or more drinking problems. Persons who drank more reported spending less time in productive activities such as rehabilitation therapies, thereby negatively affecting rehabilitation success. 

Substance use is an often-overlooked problem in rehabilitation settings. Staff who do not know how to recognize substance abuse problems are unlikely to intervene in a timely or effective manner. Referral links to chemical dependence programs are needed if a potential dual disability is to be prevented. Because few specialty programs exist for persons with physical disabilities, rehabilitation staff at facilities across the country should develop links with local programs or develop their own programs and encourage communication about the needs of persons with both physical disabilities and chemical dependency problems. 

Early identification of persons with spinal cord injuries who abuse or are addicted to substances should minimize the incidence of secondary complications of spinal cord injury, decrease the cost of rehabilitation, and improve rehabilitation outcome. The annual medical costs for all persons with spinal cord injury is estimated to be more than $1.9 billion. Therefore, timely and effective intervention for those persons who abuse or are at risk for chemical abuse is both humane and cost-effective. 

Minorities with Disabilities by Sheila Milan, Kishwakea Medical Association, Ltd., Sycamore, Illinois. 

After acute care for spinal cord injury, many patients are sent to rehabilitation units for further evaluation. However, because of cost and available space, many are discharged to their communities totally unprepared for what lies ahead. Quality psychosocial services are not available, and many patients are doomed to reenter the hospital or rehabilitation center for secondary problems mostly brought on by psychological stress and depression. 

Adjustments to injury will vary depending on individuals’ backgrounds and available resources. A large percentage of minorities live in urban areas where educational and medical facilities are abundant; but their living situations preclude access to these facilities. 

Many spinal cord-injured (SCI) minorities live with inadequate attendant care and in housing not designed for wheelchairs. Their ability to move from place to place—either in the home or outside the home—is limited. Public transportation is available on a limited basis. 

The literature contains reports on psychosocial issues facing persons with SCI but these reports are rarely specifically for minorities. Patients who are discussed are usually males of prominent standing who have adjusted under controlled circumstances (education, finances, and emotional stability), but not under the circumstances that those individuals without those resources must face. 

Community support groups are nearly nonexistent in minority neighborhoods, perhaps because of the lack of public awareness or visibility. Many individuals look to their former rehabilitation centers for a social outlet; however, because of a lack of funding, those facilities cannot accommodate them on any regular basis. Some individuals turn to religious services for spiritual enrichment and an occasional shopping excursion. 

Psychological adjustments for the minority disabled adult can be devastating, and this is a subject in need of extensive research and investigation. 

Microvascular Wound Reconstruction by Kevin Strathy, M.D., Sister Kenny Institute, Minneapolis, Minnesota. 

At the core of any surgical repair of a decubitus ulcer lies education and the prevention of its recurrence. If the patient is not armed with proper education, motivation, and assisting devices to prevent recurrence, failure is guaranteed. Once those building blocks are in place and the patient is medically stable and adequately nourished, a plan for surgically correcting larger pressure sores is in order. 

Surgery must be designed to provide adequate coverage with minimal destruction of healthy tissues. Success depends on the quality of the tissues, the delivery of oxygen and nutrients, and the prevention of infection. The surgical procedure itself may be in the form of a primary closure, skin grafting, the application of a skin flap or muscle flap, or a microvascular free-flap. A combination of these procedures is often used. 

Each procedure has advantages and disadvantages. Primary closure is a simple procedure in which less healthy local tissues are used and a scar forms immediately on the pressure site. Split or full thickness skin grafting is a relatively simple procedure as well, but the grafts are often not durable enough to withstand constant and repeated pressure. Skin flaps and muscle flaps are the mainstay of treatment. These techniques allow the mobilization and application of healthy, well-vascularized tissue and generally add padding over bony prominences. Free microvascular tissue transfer provides the greatest flexibility in wound repair, but it is also a very demanding and technically difficult procedure. 

All of these operative techniques are reliable when applied in the proper setting. Future developments in skin-breakdown management for spinal cord-injured patients will probably result from our understanding of wound metabolism and sensory renervation of denervated areas. 

Computer Applications for Evaluating People at High Risk of Pressure Sores by Martin Ferguson-Pell, Ph.D., Helen Hayes Hospital, West Haverstraw, New York. 

Two clinical tools that cultivate advances in computer technology form the basis of a systematic approach to pressure sore prevention in the clinical setting. CUSHFIT is an expert system that we have developed at Helen Hayes Hospital. It assists the clinician in selecting a suitable cushion to meet an individual patient’s needs. PRAM—the Pressure Relief and Asymmetry Monitor—is a portable data-logger, also developed at Helen Hayes Hospital, that includes a force transducer and data storage system capable of monitoring wheelchair activities for up to 30 days in the held. It detects and time-stamps all pressure-relief activities and the duration of wheelchair use without technical support from either clinic staff or the user. It also provides a statistical measure to detect behavioral or activity-related sitting asymmetry. 

Both tools are intended to enhance clinicians’ decision-making skills by providing objective information and a structure in which to use that information. Both developments have evolved from needs identified by clinical specialists and have been realized through interactive design and extensive clinical testing and evaluation. 

Both developments are intended to be used at the Pressure Sore Prevention Clinics (PSPCs). Although only a few PSPCs are in operation, this type oh clinic, as originally demonstrated by Reswick and Rogers, has been shown to be successful in reducing pressure sore incidence in a number of independent studies in the United Kingdom, the United States, South Africa, and Australia. Patients are referred to the clinics because they arc considered to be at significant risk for developing pressure sores and are typically active wheelchair users.

The clinics have three goals: 

1. To identify effective support services (usually a wheelchair cushion, but often cushioning or use while driving and in other situations where tissues can experience prolonged periods of unrelieved pressure).

2. To educate the patient and reinforce strategies for self-help activities to reduce conditions that may initiate pressure sores. Activities such as pressure relief practices~ skin checks, correct selection of clothing, and good nutrition are examples of measures thought to reduce the likelihood of tissue breakdown.

3. To provide a contact person with expertise to advise patients in the event that tissues show evidence of the onset of pressure sore (e.g., persistent skin redness). 

Clinical Prevention of Decubitus Ulcers by Susan L. Gather, M.A., O.T.R., The Institute for Rehabilitation and Research, Houston, Texas. 

Persons with spinal cord injuries have a broad spectrum of needs. For each patient, though, the constraint that is of primary importance is protection to prevent soft tissue trauma. Much of the emphasis in seating these patients relates to developing a seating surface that controls the stresses in soft tissues while maintaining the person’s stability.

Our understanding of pressure sore etiology is not complete, and the understanding that does exist often is not effectively transferred into practical solutions that accommodate each individual’s daily activities. Most studies over the past 25 years have focused on biomechanical aspects of pressure sore formation, although more recently investigators have begun to appreciate that tissue breakdown is probably a multidimensional process, which includes variables such as pressure, sheer loading, general metabolic condition, local tissue integrity and viability, age, edema, repeated pressure, altered sensation, neurotropic effects, and psychological factors. 

Most clinical pressure sore management efforts have focused on the medical and surgical treatment of a developed sore. This approach is based on the acute care model and offers little individual prevention strategy. Technology has focused its efforts—sometimes with success, sometimes not—on a series of inventions, including alarm systems, sitting time monitors, pressure evaluators, and “the perfect wheelchair cushion.’ Education has proven to be similarly of mixed success. 

The Rehabilitation Engineering Center of The Institute for Rehabilitation and Research in Houston, Texas, seeks to maximize the best efforts of the clinical, technical, and educational fields. Its approach is based on integrating research results into clinical and educational activities that result in effective patient assessment, individualized equipment prescriptions, and increased patient and family awareness about their responsibilities in pressure sore management. This model may well serve as a framework for future efforts in research, clinical management, and patient education. 

Reducing Risk of Pressure Sores: Effects of Watch Prompts and Alarm Avoidance on Wheelchair Push-ups by Glen W. White, M.S., M.A., Research and Training Center for Independent Living, Lawrence, Kansas 

More than 1 million Americans develop pressure sores each year; over half of those using wheelchairs eventually develop a decubitus. Medical treatment for a single sore can amount to more than $30,000; and in America alone the total annual cost of such treatment is more than $3 billion. According to one estimate, pressure sore treatment may top 25% of insurance companies’ total spinal cord injury-related medical expenses.

Infection, dehydration, anemia, and electrolyte imbalance all result from pressure sores, as do pain, disfigurement, lengthy periods of medical treatment, and hospitalization. Because medical treatment requires prolonged bed rest, those with decubiti typically have reduced contact with family and friends and disrupted employment or job loss. 

Behaviors associated with reducing the risk of decubiti include performing regular pressure relief, frequently inspecting skin, practicing regular hygiene, and eating nutritious meals. Regular pressure relief, in the form of wheelchair push-ups, is widely regarded as a primary deterrent. However, no data are available on natural levels of compliance, and studies assessing the effects of promoting compliance often lack methodological rigor and empirical analysis. 

The author and colleagues used an adaptation of Merbitz et al.’s automatic recording device, which continuously monitors the frequency and duration of participants’ weight shifts. Participants in the current study were two 11-year-olds (one female and one male), both of whom scored low to normal on intelligence tests. The complete intervention program, known as Beep ‘n’ Lift, included instructions (viewing photos of pressure sores, discussing the rationale for doing wheelchair pushups, with instructions and modeling), prompting with a watch beeper (every 30 minutes), and alarm avoidance (alarm under seat cushion sounded after any 30-minute interval in which a participant did not do a wheelchair push-up of at least 3 seconds). Participants were rated on four conditions: baseline (no prompt), Beep ‘n’ Lift (both the watch beeper and the alarm), alarm only, and beeper only. 

At the study’s conclusion, the participants showed an average percentage of intervals with appropriate wheelchair push-ups 3.2 times higher during Beep ‘n’ Lift conditions than during baseline conditions. 

Participants using only beepers did their lifts at appropriate intervals twice as often as did those without any prompts, but did so only two-thirds as often as those with all prompts; participants using only alarms did their lifts more than twice as often as those without any prompts but only half as often as those with all prompts. 

Results suggest that the combination of instruction, prompts, and avoidance procedures was effective in producing and maintaining appropriate wheelchair push-ups. Further studies must address, among other issues, how compliance with this behavioral prescription affects long-term outcomes, and how Beep ‘n’ Lift in combination with other biological, environmental, and behavioral factors affects long-term outcome. Long-term compliance among independently living adults with physical disabilities, those with limited upper-body strength, and bedridden nursing home residents must also be assessed. 

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COLLOQUIUM PARTICIPANTS

Cardiovascular/Cardiopulmonary Complications
Facilitator: Roger Glaser, Ph.D., Wright State University, Dayton, Ohio
Augusta Alba, M.D., Goldwater Memorial Hospital, New York, New York
Gilbert Brenes, M.D., Harmarville Rehabilitation Center, Pittsburgh, Pennsylvania
Maureen Bradley, R.N., M.S.N., Rehabilitation Institute of Sarasota, Sarasota, Florida
Michael J. Devivo, Dr.P.H., Spain Rehabilitation Center, Birmingham, Alabama
Gerald Fletcher, M.D., Emory University Medical Center, Atlanta, Georgia
Philip L. Graitcer, D.M.D., Centers for Disease Control, Atlanta, Georgia
Jill Koval, Shepherd Spinal Center, Atlanta, Georgia
James Krause, Ph.D., Shepherd Spinal Center, Atlanta, Georgia
Robert Menter, M.D., Craig Hospital, Denver, Colorado
Geno J. Merli, M.D., Thomas Jefferson University Hospital, Philadelphia, Pennsylvania
Kristjan T. Ragnarsson, M.D., Mt. Sinai Medical Center, New York, New York
William R. Taylor, M.D., Centers for Disease Control, Atlanta, Georgia
Gale Whiteneck, Ph.D., Craig Hospital, Denver, Colorado

Genitourinary And Bowel Complications
Facilitator: Bruce C. Green, M.D., Shepherd Spinal Center, Atlanta, Georgia
Richard Hoffman, M.D., M.P.H.,Colorado Department of Health, Denver, Colorado
Lesley M. Hudson, M.A., Shepherd Spinal Center, Atlanta, Georgia
Todd A. Linsenmeyer, M.D., Kessler Institute for Rehabilitation, Newark, New Jersey
Keith Lloyd, M.D., Spain Rehabilitation Center, Birmingham, Alabama
lnder Perkash, M.D., Veterans Administration Hospital, Stratford, California
Marilyn Pires, R.N., M.S., Signal Hill, California
Mary Ellen Pischke, Minnesota Independent Living Council, Oronoco, Minnesota
Suzanne M. Smith, M.D., Centers for Disease Control, Atlanta, Georgia 
Kenneth B. Waites, M.D., Spain Rehabilitation Center, Birmingham, Alabama
M. Patricia West, M.S.W., Colorado Department of Health, Denver, Colorado 

Neuro-Musculoskeletal Complications
Facilitator: John F. Ditunno, M.D., Thomas Jefferson University Hospital, Philadelphia, Pennsylvania
Kathleen Acree, M.D.C.M., J.D., M.P.H., California Department of Health Services, Sacramento, California
Joel A. DeLisa, M.D., Kessler Institute for Rehabilitation, Newark, New Jersey
William H. Donovan, M.D.,The Institute for Rehabilitation and Research, Houston, Texas
Robert Edgar, M. D., Craig Hospital, Denver, Colorado
Kenneth Gerhart, M.S., Craig Hospital, Denver, Colorado
Ralph J. Marino, M.D., Thomas Jefferson University Hospital, Philadelphia, Pennsylvania
James D. McGlothlin, Ph.D., Centers for Disease Control, Cincinnati, Ohio
Elliot J. Roth, M.D., Rehabilitation Institute of Chicago, Chicago, Illinois
John Schatzlein, Sister Kenny Institute, Minneapolis, Minnesota
Stephen H. Sprigle, Ph.D., University of Virginia, Charlottesville, Virginia
Samuel L. Stover, M.D., Spain Rehabilitation Center, Birmingham, Alabama
Robert L. Waters, M.D., Rancho Los Amigos Hospital, Downey, California 

Psychosocial Complications
Facilitator: Marcus J. Fuhrer, Ph.D., Institute for Rehab. and Research, Houston, TX
Jane Brown, M.S., Spain Rehabilitation Center, Birmingham, Alabama
Nancy Crewe, Ph.D., Michigan State University, East Lansing, Michigan
Gerben DeJong, Ph.D., National Rehabilitation Hospital, Washington, D.C.
Allen W. Heinemann, Ph.D., Rehabilitation Institute of Chicago, Chicago, Illinois
Michael Margce Ed.D., Syracuse University, Syracuse, New York
Sheila Milan, Kishwaukee Medical Associates, Sycamore, Illinois
Sandra S. Parrino, National Council on Disability, Washington, D.C.
J. Scott Richards, Ph.D., Spain Rehabilitation Center, Birmingham, Alabama
Tom Seekins, Ph.D., Rural Research and Training Center, Missoula, Montana
Roberta Trieschmann, Ph.D., Scottsdale, Arizona,
Charles Tubre, Louisiana Department of Health and Hospitals, New Orleans, Louisiana

Skin Complications
Facilitator: J. Darrell Shea, M.D., Orlando Orthopedic Center Orlando, Florida
David Apple, M.D., Shepherd Spinal Center, Atlanta, Georgia
Vivian Beyda, Dr.P.H., Eastern Paralyzed Veterans of America, Jackson Heights, NY
Carolyn E. Carison, R.N., Ph.D., Rehabilitation Institute of Chicago; Chicago, Illinois
Thomas B. Cole, MD., M.P.H., NC Department of Human Resources, Raleigh, NC
Martin Ferguson-Pell, Ph.D., Helen Hayes Hospital; West Haverstraw, New York
Susan L. Garber, M.A., O.T.R., Institute for Rehabilitation and Research, Houston, TX
Robert Graebe, Roho, Inc., Bellevile, Illinois
Dawn Pepper, R.N., Brooklyn Center, Minnesota,
N. Mark Richards, M.D., Pennsylvania Department of Health, Harrisburg, Pennsylvania
Joseph Sniezek, M.D., M.P.H., Centers for Disease Control, Atlanta, Georgia
Kevin Strathy, M.D., Abbott-Northwestern Hospital, Edina, Minnesota
Kent Waldrep, National Paralysis Foundation, Dallas, Texas
Glen W. White, M.S., M.A., Research and Training Center on Independent Living, Lawrence, Kansas

Observers
Myron J. Adams, Jr., M.D., Centers for Disease Control, Atlanta, Georgia
Carolyn Albright, RN., Shepherd Spinal Center, Atlanta, Georgia
James S. Belloni, M.A., Centers for Disease Control, Atlanta, Georgia
Ruth Brannon, M.P.H., National Rehabilitation Hospital, Washington, D.C.
Larry Burt, Centers for Disease Control, Atlanta, Georgia
Diana D. Cardenas, M.D., University of Washington, Seattle, Washington
Steve Davidson, M.Ed., Georgia Division of Public Health, Atlanta, Georgia
Terry Dockery, R.N., Shepherd Spinal Center, Atlanta, Georgia
Marion Finley, Shepherd Spinal Center, Atlanta, Georgia
Martha Foster, Shepherd Spinal Center, Atlanta, Georgia
Murray Freed, M.D., New England Regional SCI Center, Boston, Massachusetts
Arthur C. Jackson, Centers for Disease Control, Atlanta, Georgia
Simon Levine, Ph.D., University of Michigan, Ann Arbor, Michigan
Mark S. Long, Centers for Disease Control, Atlanta, Georgia
Frederick Maynard, M.D., University of Michigan, Ann Arbor, Michigan
Paul R. Meyer Jr., M.D., Rehabilitation Institute of Chicago, Chicago, Illinois
Elizabeth Nelson, Shepherd Spinal Center, Atlanta, Georgia
Melinda Pavin, MPH., Centers for Disease Control, Atlanta, Georgia
Andrew M. Pope, Ph.D., Institute of Medicine, National Academy of Sciences, Washington, D.C.
Mark L. Rosenberg, M.D., M.P.P., Centers for Disease Control, Atlanta, Georgia
Rebecca Sadin, P.T., M.A., Paralyzed Veterans of America, Washington, D.C.
Richard W. Sattin, M.D., Centers for Disease Control, Atlanta, Georgia
Jessica Scheer, Ph.D., National Rehabilitation Hospital, Washington, D.C.
Cathy Shepherd, O.T.R., Shepherd Spinal Center, Atlanta, Georgia
Steve M. Shindell, Ph.D., Shepherd Spinal Center, Atlanta, Georgia
Joseph B. Smith, Centers for Disease Control, Atlanta, Georgia
Patricia W. Smith, R.N., DeKalb Medical Center, Decatur, Georgia
Thomas P. Stewart, Ph.D., Retec, Inc., Orchard Park, New York
Jack E. Terbeek, Gaymar industries, Orchard Park, New York
Barbara R. Trades, M.S., Shepherd Spinal Center, Atlanta, Georgia
Susan H. Vesmarovich, Shepherd Spinal Center, Atlanta, Georgia
W. Lewis Webb, Centers for Disease Control, Atlanta, Georgia
Robert J. Weber, M.D. SUNY-Syracuse Health Science Center, Syracuse, New York
Charlene Young, M.P.H., Hawaii Department of Health, Honolulu, Hawaii