Preventing Secondary Conditions Associated with 
Spina Bifida or Cerebral Palsy Symposium 
February 17-19, 1994, Crystal City, Virginia

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Toward a State of Well-being: Promoting Healthy Behaviors to Prevent Secondary Conditions
Michael Marge


I WOULD LIKE first to thank Dr. Katherine Seelman, who is Director of the National Institute for Disability and Rehabilitation Research, for her kind and generous introduction. I would also like to thank Dr. Don Lollar for his invitation to be your luncheon speaker. I will try to reward your attention with suggestions that may prove helpful as we look at the issue of preventing secondary conditions in people with spina bifida and cerebral palsy. I would be remiss if I did not commend all of you who are attending and the sponsors-the United Cerebral Palsy Associations, Spina Bifida Association of America, the National Center for Medical Rehabilitation Research, and the Centers for Disease Control and Prevention-for this important conference, which addresses a nationally significant problem.

And, finally, I must pay tribute to my good friends and professional colleagues at the Centers for Disease Control and Prevention-Dr. Mike Adams, Dr. Godfrey Oakley, Dr. Steve Thacker, Jack Jackson, and Larry Burt-for their years of service on behalf of improved health care for persons with disabilities. Actually, the whole thrust of the prevention of primary and secondary disabilities grew out of our early discussions back in 1987 and 1988.

Today, I wish to present to you for your consideration a concept and a recommendation.

OUR LONG-TERM OBJECTIVE FOR ALL AMERICANS

In 1988 I wrote, "Persons with disabilities are at significant risk for additional or secondary disabilities. Because of this increased risk, especially for persons suffering from the 'disuse syndrome,' it is important that a comprehensive health promotion component is included in the rehabilitation program for individuals" (Marge, 1988). Many health providers who work with disability view the patient's condition as a static entity, but disability should be perceived as a condition undergoing changes at all times, from the moment of its acquisition. These changes can lead to further health complications (Marge, 1988). A health promotion program should become an integral part of the rehabilitation process, beginning early in the primary treatment phase and continuing throughout life (Marge, 1988).

When we speak about improving health care for any segment of the American population, I believe it becomes important to ask, "Should the improvement be provided to all members of the population or just a segment?" I begin with the premise that all Americans are entitled to the highest quality of health care (Marge, 1981). Health care services should be directed to attain the greatest degree of physical, mental, and social well-being. My concept of physical, mental, and social well-being is influenced by the scholarship of Angus Campbell (1977), distinguished social psychologist at Stanford University.

The definition of well-being includes two major dimensions: First, satisfaction with ten domains of life: health, work, marriage, housing, community, standard of living, social relationships, creative expression, education, and future prospects for growth and development. Satisfaction with each domain results in an overall experience of pleasantness of life. The person with a high degree of physical, mental, and social well-being speaks about a life that is interesting, enjoyable, worthwhile, friendly, full, hopeful, and rewarding, one that brings out the best in the person.

The second dimension is the absence of perceived stress. The person feels that life is easy, not hard; free, not tied down; well-paced, not rushed; and relatively free of worry, especially about money and other issues (Campbell, 1977). A state of well-being should be the objective throughout the life span for all persons, especially for those with disabilities. This means attaining and maintaining a state of well-being during each stage of life until the time of death.

PREVENTION AND ITS SUBCATEGORIES

The important question here is, How does one attain well-being when one has chronic functional limitations, as do children and adults with spina bifida or cerebral palsy? In this context, prevention becomes the key.

Prevention is accomplished by activities in three major areas (Marge, 1981, 1986). The first is health promotion. The goals of health promotion are to educate people about the risks related to health abuses and to increase each person's commitment to a healthy lifestyle that can prevent premature death and disability. It concerns those behaviors that affect health status and are under a person's direct control. The Public Health Service has reported that 53% of the variance for attaining and maintaining good health is related to lifestyle, whereas biological inheritance represents only 13% of the variance.

The second major activity is preventive health services. These are provided by the health delivery system and include immunization, family planning, acute and primary health care as needed, and control of contagious diseases.

The third major activity is health protection, which is focused on hazardous environmental factors that cause disability and premature death. Under this category are included control of toxic metals, airborne pollutants, soil pollutants, radiation, dangerous levels of noise, water pollutants, unsafe drugs, harmful consumer products, as well as control of the safety of food and milk. These controls are generally regulated or monitored by local, state, or federal governments and their agencies.

For prevention to realize maximum results, the three major activities must be implemented together. A holistic approach, therefore, is recommended, not just a focus on health promotion or on preventive health services. Each activity is part of a whole effort (Marge, 1986, 1991, 1993).

THE SECONDARY CONDITIONS OF SPINA BIFIDA AND CEREBRAL PALSY

In an effective health care system, much can be done to prevent secondary conditions. See Table 1 for a list of the most common health complications associated with spina bifida and cerebral palsy. These secondary conditions are found at various stages in the life of a person with spina bifida or cerebral palsy. (I have recently completed an analysis that identifies the time ranges when these conditions may occur; they will be included in a forthcoming publication.) These are the conditions that we are attempting to prevent.

Table 1
Secondary Conditions Associated with Spina Bifida and Cerebral Palsy

Learning disabilities
Depression
Adjustments in social relationships
Mobility limitations
Joint and muscle pain
Progressive contractions
Problems with balance
Nerve entrapments
Bladder incontinence
Bowel incontinence and control
Bowel incontinence and control (constipation)
Allergies (latex)
Gastrointestinal problems
Dental problems
Seizures
Obesity
Compromised respiratory function
Tethered cord problems in adults
Spinal cord compression
Cardiovascular disorders
Pressure sores
Spasticity changes

THE IMPACT OF THE COMPRESSION OF MORBIDITY

If we wish to attain the greatest degree of physical, mental, and social well-being throughout life, then we need to look at what happens to Americans in the aging process. Although during the past three decades life expectancy has increased 16.4 years on the average for people 65 and older, only 12 of these years will be in healthy living (National Center for Health Statistics, 1990). Statistics about the prevalence of the main causes of limitations on activity for each age group of Americans in the mid-1980s reveal that with increasing age, chronic diseases and limited mobility loom proportionately much larger in the lives of those older than 45 than in younger cohorts; sensory and intellectual limitation become proportionately more significant later, after the age of 70 (LaPlante, 1988). As we grow older, we are at greater and greater risk for primary and secondary disabilities.

Our health objective should be that we continue to increase the life span of all Americans but at the same time increase the number of years people experience a healthy life with the greatest degree of functional independence.

Functional independence is defined as a person's continuing ability to perform activities required for daily living with the least amount of assistance (Katz, 1983). More independence, less dependency. About 33 million people of all ages have reduced physical or mental abilities due to chronic conditions that result in severe functional limitations (National Center for Health Statistics, 1989). It is further estimated that of this number, 17% or 5.6 million elderly disabled need assistance with personal care or home management (Institute of Medicine, 1991).

One objective, therefore, is to compress morbidity as much as possible to just before the time of natural death (Fries, 1990). What person with spina bifida, for instance, wishes to face the prospect of acquiring a secondary condition such as a stroke, to suffer 10 or 20 years before natural death? Let all of us live as long as it is ordained, but let's live in good health and dignity, preserving a life of independency, a life free of pain, suffering, and physical and mental limitations. In 64 B.C. Seneca said, "The purpose of life is not in living but in living well!"

PREVENTION PROGRAMS FOR PERSONS WITH SPINA BIFIDA OR CEREBRAL PALSY

You may ask, "What can be done when a person has a primary disability such as spina bifida and cerebral palsy?" Let's start by saying that health promotion should begin as early in life as possible (Marge, 1988). First, we should teach each person to become personally responsible for a large portion of his or her health status. Second, we should teach the person to become joint manager of his or her own short-term and long-term rehabilitation program. There is a great deal of evidence to support certain recommended behaviors for attaining and maintaining the greatest degree of well-being.

These behaviors are recommended not only to help prevent primary disabilities but also to reduce the risk for acquiring secondary conditions. Let me enumerate these practices.

• Improve diet and nutrition.
• Reduce or eliminate tobacco use.
• Eliminate alcohol and drug abuse.
• Institute weight control.
• Engage in a recommended program of physical exercise and activity prescribed by a team of specialists knowledgeable about spina bifida and cerebral palsy.
• Have easy access to primary care services

- that include screening for blood pressure problems, cancer, urinary incontinence, gastrointestinal conditions, and problems with vision, hearing, or cognitive functions;

- that monitor neurological status and immunizations;

- and that provide medical care for illness, disease, and injury, as well as appropriate counseling for preventive care, especially for depression and for medication use.

• Receive strong social support through various sources: family, friends, support groups.
• Practice injury prevention on the road, the recreational field, and at home.
• Control environmental hazards, including noise, pollution, food and water contamination, and pestilence.
• Achieve and maintain a living income through work or through governmental support that allows a person a reasonable degree of quality of life.
• Practice sound stress management.
• Have a good night's sleep.

DELIVERY OF HEALTH CARE SERVICES

In order to deliver the second major activity of prevention, that is, effective and responsive health care services that may be necessary if we are to prevent secondary conditions in persons with spina bifida and cerebral palsy, there must be a single port of entry for the individual. In other words, there should be a one-stop health care facility in each community to which a person may go in order to receive all the necessary services, or at least some of the services and referrals to other health care facilities. Such care should continue from infancy throughout the natural life span of each person.

Health care must be continuous, coordinated, and comprehensive throughout life. At the present time it is difficult to find such holistic community-based programs for persons with severe disabilities. It seems logical to me that the spina bifida or cerebral palsy clinics in each community assume this responsibility. Another suggestion is to expand the role of the independent living centers to include the provision of continuous, coordinated, and comprehensive health care throughout a person's life.

MOVING PREVENTION FROM DREAM TO REALITY

If you accept my recommendation that we provide effective prevention services to people with spina bifida or cerebral palsy, then we need to look at ways of transforming the idea to a reality. There are several approaches I would like to recommend to each of you. The first is for the participants of this conference, especially persons with disabilities and their families, to support a resolution that asks President and Mrs. Clinton to include in their health reform plan a provision for continuous, coordinated, and comprehensive services for persons with severe disabilities managed through a single port of entry in each community. Any other plan for health care delivery will be unacceptable. If approaching the White House is considered ill-advised or insufficient, then take the resolution and the proceedings of this conference with its recommendations to U.S. Senator Tom Harkins and to U.S. Congressman Henry Waxman. I predict that they will receive the resolution and recommendations with great interest.

In any event, don't let these deliberations collect dust because of timidity about bringing them to the highest level in our government. The time has come to request-no demand-prevention services that reduce the risk for secondary conditions and provide the greatest measure of physical, mental, and social well-being throughout your lifetime. Let's call for A Healthy People 2000 for Americans with disabilities!

REFERENCES

Campbell, A. (1977). Subjective measures of well-being. In G. W. Albee & J. M. Joffe (Eds.), Primary prevention of psychopathology: Vol. 1. The issues. Hanover, N.H.: University Press of New England.

Fries, J. F. (1990). An introduction to the compression of morbidity. In P. R. Lee & C. L. Estes (Eds.), The nation's health (3rd ed.). Boston: Jones and Bartlett.

Institute of Medicine. (1991). Disability in America: Toward a national agenda for prevention. Washington, D.C.: National Academy Press.

Katz, S. (1983). Assessing self-maintenance: Activities of daily living, mobility, and instrumental activities of daily living. Journal of the American Geriatric Society, 31(12), 721-727.

LaPlante, M. P. (1988). Data on disability from the National Health Interview Survey, 1983-1985. In InfoUse Report. Washington, D.C.: National Institute for Disability and Rehabilitation Research.

Marge, M. (1981). The prevention of human disabilities: Policies and practices for the 80s. In L. Perlman (Ed.), International aspects of rehabilitation: Policy guidance for the 1980s. Alexandria, Va.: National Rehabilitation Association.

Marge, M. (1986). The prevention of disabilities. In Toward independence: An assessment of federal laws and programs affecting persons with disabilities. Washington, D.C.: National Council on Disability

Marge, M. (1988). Health promotion for persons with disabilities moving beyond rehabilitation. American Journal of Health Promotion, 2(4), 29-35.

Marge, M. (1991). Testimony in support of the Disability Prevention Act of 1991 before the U.S. House of Representatives Committee on Health and Energy. Congressional Record, Serial No. 102-48, 69-78.

Marge, M. (1993). Disability prevention: Are we ready for the challenge? Asha, 35, 42-44.
National Center for Health Statistics (1989). Current estimates from the National Health Interview Survey, United States, 1988. Vital and Health Statistics. Series 10, No. 173, DHHS Publications (PHS) 89-1501. Hyattsville, Md.: U.S. Department of Health and Human Services.

National Center for Health Statistics. (1990). Health, United States, 1989 and Prevention Profile. DHHS Pub. No. (PHS) 90-1232. Hyattsville, Md.: U.S. Department of Health and Human Services.