Private practices can provide enhanced prenatal services for poor women as effectively as public clinics

Due to expanded Medicaid eligibility and Medicaid managed care for pregnant women, more low-income women are obtaining prenatal care in private practice settings. And in many cases, with better results, according to a recent study. It shows that women who obtained multidisciplinary prenatal care at private physicians' offices, which were reimbursed by Medicaid for this enhanced care, had better outcomes than women seen in public health department clinics, community clinics, or private hospital clinics. Enhanced care includes assessments of nutritional, psychosocial, and health educational risks and individualized counseling along with clinical care.

Lisa Simpson, M.B., B.Ch., M.P.H., Deputy Administrator of the Agency for Health Care Policy and Research, and her colleagues at the University of California, San Francisco, compared birth outcomes of Medicaid-eligible women receiving care from public and private providers where both were certified to deliver enhanced, multidisciplinary prenatal care services in selected areas of Los Angeles and San Francisco. Historically, specialized prenatal support services have been developed by public providers with Title V funding allocated through the Maternal and Child Health Bureau of the Public Health Service. In contrast, private settings usually focus on screening, diagnosis, and treatment of the complications of pregnancy and generally do not offer multidisciplinary support services tailored to the needs of low-income women, such as advice about drug abuse.

Results showed that when the full package of services was offered by both public and private providers, birth outcomes in public health departments were significantly worse than in private physicians offices, even after adjusting for pregnancy risk factors. Women treated at public health department clinics were more apt to have low-birthweight babies and to deliver preterm. When the odds were adjusted for differences in use of prenatal care, birth outcomes were still worse in public health department clinics and private hospital and community clinics than in physicians offices. These findings challenge the conventional wisdom that public health departments necessarily provide the most appropriate prenatal care to low-income pregnant women and achieve the best outcomes.

For more information, see "Outcomes of enhanced prenatal services for Medicaid-eligible women in public and private settings," by Dr. Simpson, Carol Korenbrot, Ph.D., and John Greene, M.A., in the March/April 1997 issue of Public Health Reports 112, pp. 122-134.

Reprints (AHCPR Publication No. 97-R058) are available from the AHCPR Publication Clearinghouse.

Pediatric ICU providers vary markedly in their attitudes about life-support interventions

Attitudes toward life-support interventions offered to critically ill children and their families vary markedly within a single intensive care unit (ICU), depending on the nurses and physicians supervising the children's care, concludes a study supported in part by the Agency for Health Care Policy and Research (HS00106).

Adrienne G. Randolph, M.D., M.Sc., of the University of California, San Francisco, and colleagues asked physicians and nurses with about 10 years of pediatric ICU experience about their willingness to use life-support interventions in various scenarios. The clinicians were asked whether they would use intravenous vasopressors, such as adrenalin, to boost flagging blood pressure; perform chest compressions; or withdraw life support for 7- or 8-year-old hypothetical pediatric ICU patients with congenital heart disease or long-term cancer who had undergone several surgeries and been hospitalized numerous times since birth. The scenarios varied concerning dependency and neurologic status of the child, stability and wishes of the family, and predicted chance of survival.

Based on their answers to the questionnaire outlining the patient scenarios, half of 56 caregivers at one ICU would use life-support measures and half would not for the same patient. The most important factors influencing caregivers' life-support decisions were family preferences (76 percent of decisions), probability of survival (50 percent), and the patient's functional status (47 percent). There was marked variability among ICU caregivers in 79 percent (38 of 48) of the questions, and 20 percent to 50 percent of caregivers chose opposing directions of patient management when they were asked to indicate the likelihood that they would perform a specific life-support intervention.

These findings were based on the responses of physicians and nurses caring for oncology or cardiology patients at a university-affiliated pediatric ICU to a questionnaire. They were asked to rate the importance of seven factors in their decisions to offer or restrict life support in vignettes of clinical cases: diagnosis, probability of survival to ICU discharge, functional status, patient discomfort, family preferences, stability of the social situation, and malpractice risk.

Details are in "Factors explaining variability among caregivers in the intent to restrict life-support interventions in a pediatric intensive care unit," by Dr. Randolph, Mary B. Zollo, R.N., Robert S. Wigton, M.D., and Timothy S. Yeh, M.D., in Critical Care Medicine 25(3), pp. 435-439, 1997.

Childhood diabetes exacts a heavy economic toll on families, even those with health insurance

Management of insulin-dependent diabetes mellitus (IDDM) requires regular and frequent blood glucose testing and insulin adjustments, as well as regular contact with health care professionals, to prevent short- and long-term complications ranging from diabetic shock to blindness and peripheral vascular problems. Families that have a child with IDDM often face much larger out-of-pocket health expenses than other families with similar health coverage because health plans often do not fully cover the syringes, insulin, and blood testing strips needed to manage the disease.

A recent study, supported in part by the Agency for Health Care Policy and Research (NRSA Fellowship F32 HS00038), found that many families with a child with IDDM had no reimbursement for insulin (10 percent), syringes (10 percent), or blood testing strips (30 percent). In fact, out-of-pocket expenses were 56 percent higher in the IDDM-affected families than in non-affected families with similar health insurance coverage. In addition,17 percent of IDDM-affected families had medical expenses that totaled over 10 percent of their household income compared with 5 percent of control families.

This suggests "catastrophic" health care costs for low-income (under $20,000 per year) IDDM-affected families, notes Thomas J. Songer, Ph.D., of the University of Pittsburgh. Dr. Songer and his colleagues sent a questionnaire during 1989 and 1990 to 197 case families with a child with IDDM (identified from the Allegheny County, PA, IDDM Registry) and 142 control families with no diabetic children to assess out-of-pocket costs for health care services and supplies not reimbursed by insurance. The families were similar in race, household income, education, family size, and health insurance coverage.

Over 60 percent of affected families with private plans reported having to pay a deductible for either insulin, syringes, or blood testing strips, and more than 85 percent had to pay a copayment for these items. Overall, the median amount of money spent on health care and insurance premiums amounted to $1,125 for the case families compared with $625 for the control families. Finally, case families spent a greater share of their family income on medical expenses than control families (5.6 vs. 3.1 percent of income).

For more details, see "Health insurance and the financial impact of IDDM in families with a child with IDDM," by Dr. Songer, Ronald E. LaPorte, Ph.D., Judith R. Lave, Ph.D., and others, in the April 1997 issue of Diabetes Care 20(4), pp. 577- 584.

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Quality of Care

Advance directives often don't influence end-of-life patient care

Advance directives—living wills, health care proxies, and durable powers of attorney—have limited impact on end-of-life patient care, concludes a study supported by the Robert Wood Johnson Foundation and by the Agency for Health Care Policy and Research (HS07075). Why? The few patients who have directives seldom tell their doctors about them. Second, most written directives are too vague to make a difference in the patient's care. For instance, when researchers reviewed the charts of 4,804 dying patients, they found only 688 written advance directives. Among those directives, only 3 percent (22) were specific enough to guide physician's decisions about a particular life-extending treatment in the patient's actual situation.

Among patients who had written advance directives, only about 1 in 10 had talked with their physicians when writing the directive, less than half had ever talked with any of their doctors about having a directive, and only about one-third had their wishes documented in the medical record. But even when specific instructions were present, care was potentially inconsistent in half of the cases. Furthermore, written advance directives did not reduce the use of hospital resources.

Most advance directives have limited impact because they do not result from counseling, and they contain only vague instructions, according to Joanne Lynn, M.D., M.A., of the George Washington University's Center to Improve Care for the Dying, and her colleagues. Improvements in writing and implementing advance directives are needed if these instruments are to achieve their intended impact.

These findings are based on the largest study yet done on the impact of advance directives on seriously ill patients in U.S. hospitals. The SUPPORT project—the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments—was a 10-year study of almost 10,000 patients who were hospitalized at five teaching hospitals between 1989 and 1994. The goal of the study was to understand decisionmaking and dying. The last 2 years of the study followed implementation of the Patient Self-Determination Act, a Federal statute aimed at ensuring availability and effectiveness of advance directives, including an effort to improve advance planning for more than half of patients by providing prognostic information and counseling by a skilled nurse. Even after passage of the Act, only one-fifth of patients had an advance directive. The researchers urge renewed focus on physician-patient communication and more comprehensive advance care planning.

See the April 1997 Journal of the American Geriatrics Society 45, "Do advance directives provide instructions that direct care?" by Joan Teno, M.D., Sandra Licks, Dr. Lynn, and others (pp. 500-507), "Advance directives for seriously-ill hospitalized patients: Effectiveness with the Patient Self-Determination Act and the SUPPORT intervention," by Dr. Teno, Dr. Lynn, Neil Wenger, M.D., and others (pp. 508-512), and "The illusion of end-of-life resource savings with advance directives," by Dr. Teno, Dr. Lynn, Alfred F. Connors, Jr., M.D., and others (pp. 513-518).

Increased use of DNR orders is concentrated on sicker patients, but varies by diagnosis, hospital, and patient's sex

Medicine can now prolong life into health states that many people find undesirable, such as a persistent vegetative state. Intervention to prevent cardiopulmonary resuscitation, the do-not-resuscitate (DNR) order, is probably the most commonly discussed explicit patient preference guiding end-of-life care. And it is being used more often, according to a study supported by the Agency for Health Care Policy and Research (HS06546).

The study found that patients hospitalized from 1985 to 1986 received more DNR orders than those hospitalized from 1981 to 1982 (13 percent vs. 10 percent), with patients who were most sick at admission receiving the biggest increase in such orders. Patients who received DNR orders during the later period were more likely to survive to hospital discharge (44 percent vs. 36 percent), but their survival 1 month later did not differ from patients without DNR orders.

Thus, patients dying in the hospital in the mid-1980s may have received a level of aggressiveness of care more in keeping with their prognoses and preferences than their counterparts in the early 1980s. But its not clear whether differences in DNR orders still persist in the 1990s and whether they reflect patient preferences, cautions Neil S. Wenger, M.D., M.P.H., of the University of California, Los Angeles. Dr. Wenger and his colleagues compared the relation of DNR orders to patient and hospital characteristics from 1981 to 1982 and 1985 to 1986, as well as the relation between the mortality and hospital discharge disposition of patients with DNR orders in the two time periods.

During each time period, the rate of DNR orders increased as patient sickness at admission increased. But more of the sickest patients in the later time period received DNR orders than in the earlier period (34 percent vs. 27 percent). From 1981 to 1982, DNR orders were assigned more often to older, demented, nonambulatory patients and to patients in urban hospitals or admitted to the hospital from nursing homes. During both time periods, DNR orders were assigned less often to patients in hospitals that cared for poorer patients, even after adjustment for sickness at admission, diagnosis, insurance status, ethnicity, and location.

From 1985 to 1986, more women and incontinent patients received DNR orders, and these orders were written earlier in the hospital stay, a change reflecting the increases in overall DNR order rates.

For more information, see "Changes over time in the use of do not resuscitate orders and the outcomes of patients receiving them," by Dr. Wenger, Marjorie L. Pearson, Ph.D., M.S.H.S., Katherine A. Desmond, and Katherine L. Kahn, M.D., in Medical Care 35(4), pp. 311-319, 1997.

AHCPR to focus on strengthening the evidence base about proven clinical practices

Geographic and specialty-specific variations in care, the growth of health care costs (nearly 14 percent of the gross domestic product in 1993), and the proliferation of managed care have provided strong incentives for assessing and managing clinical practices to help keep costs down while maintaining high-quality care. However, the decentralized, pluralistic health care delivery and financing system in the United States makes consistent application of universally endorsed clinical practice guidelines very difficult, notes Douglas B. Kamerow, M.D., M.P.H., of the Agency for Health Care Policy and Research, in a recent editorial. Dr. Kamerow is Director of AHCPR's Center for Practice and Technology Assessment.

Dr. Kamerow points out that the "before" and "after" of guidelines are as important as the guidelines themselves. He stresses the need to pay more attention to what happens at the topic selection and guideline development stages (the "before") and at the dissemination and implementation stages (the "after"). Broad dissemination of a guideline does not ensure its implementation, especially in the busy world of primary care, notes Dr. Kamerow.

For these reasons, AHCPR has discontinued its clinical practice guideline program and will focus instead on three distinct activities:

1. The Agency will collect and analyze existing evidence about proven practices. This will be done by new Evidence-based Practice Centers in partnership with health plans, specialty societies, hospitals, and others. (Editor's Note: see Contracts awarded for 12 Evidence-based Practice Centers.)
2. AHCPR will cosponsor an Internet-based National Guideline Clearinghouse™, so that everyone will have access to information and recommendations on major guidelines, as well as comparisons of different guidelines on the same topics.
3. The Agency will fund new research on the process of implementing guidelines into practice in an effort to close the gap between what physicians know and what they do.

For more information, see "Before and after guidelines," by Dr. Kamerow, in the April 1997 issue of The Journal of Family Practice 44(4), pp. 344-346.

Reprints (AHCPR Publication No. 97- R059) are available from the AHCPR Publication Clearinghouse.

Consumers need more information to understand and use health care report cards

Consumers frequently do not understand and often dismiss as unimportant objective (clinically based) quality-of-care information provided in quality report cards on managed care and other types of health care plans. Instead, consumers may rely on better-understood patient ratings of a plans quality of care.

Choosing a health plan has more potential impact on a person's quality of care than consumers currently realize, and because quality information is new, consumers need a context for understanding and using it, according to Judith H. Hibbard, Ph.D., and Jacquelyn J. Jewett, Dr.P.H., of the University of Oregon. In a study supported by the Agency for Health Care Policy and Research (HS08231), they analyzed the content of focus-group transcripts and followup questionnaires for 104 adults representing the publicly insured (Medicaid), privately insured, and uninsured, with five focus group sessions for each insurance group.

Participants were shown sample report cards, including definitions of the quality indicators and information about managed care plans. Participants ranked desirable event indicators—such as rates of immunizations, cervical cancer screening, mammograms, and cholesterol screening—as giving the most information about whether plan members were getting good preventive care. They believed that patient ratings of quality and satisfaction provided consumers with the most information about all nonpreventive aspects of care.

Consumers viewed patient ratings as more informative of how well patients were monitored and followed up than clinical indicators designed specifically for this purpose, such as eye exams among diabetic members, asthma hospitalizations, and low-birthweight infants. Eye exams are critical to detect diabetic retinopathy, which can lead to blindness; asthma hospitalizations are usually preventable with good asthma management by the primary care physician; and low birthweight is often an indicator of poor prenatal care. The clinical indicators were generally less well understood than patient ratings.

In today's health care arena, great expectations are being placed on consumers' ability and willingness to effectively participate in making informed health care choices. Without informed consumer choice, market reform is threatened, and consumers' best interests are undermined. The findings of this study demonstrate that not enough attention is being focused on ways to help consumers understand the new environment, their role in it, or even how to interpret or use quality-of-care information such as health care report cards and other decisionmaking tools. The researchers conclude that we need to move beyond information dissemination to education about quality-of-care information, the new health care environment, and the critical role consumers will play in ensuring quality.

See "Will quality report cards help consumers?" by Drs. Hibbard and Jewett, in the May/June 1997 issue of Health Affairs 16(3), pp. 218-228.

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HIV/AIDS Research

Better doctor-patient communication could enhance treatment compliance for HIV-infected patients

Zidovudine (ZDV) continues to be a leading antiretroviral therapy for slowing progression of the human immunodeficiency virus (HIV) into full-blown AIDS. Demand for the drug is likely to increase in light of recent studies that have shown it to be particularly effective when used in combination with other antiretroviral drugs. However, ZDV's side effects, which range from nausea and vomiting to dangerous anemia, prompt many patients to stop taking it; nonadherence rates range from 12 to 42 percent.

It appears that patients who stop taking ZDV tend to believe that taking ZDV is harmful, are skeptical of its ability to prevent illness, and feel that physicians' directives about its use in general can be disregarded, concludes a study supported by the Agency for Health Care Policy and Research (HS06415).

Patients who expressed the greatest concern about ZDV's side effects were those who typically had taken ZDV an average of 8 months and decided to discontinue the drug themselves rather than on the advice of their physicians. These findings highlight the importance of educating patients about the pros and cons of ZDV therapy and establishing regular patient-clinician dialogue concerning patients' experiences with and beliefs about ZDV. This also might help promote better patient-clinician communication, alleviate feelings of distrust about medical authority, and enhance patients' sense of control over their treatment course, explains Bruce D. Rapkin, Ph.D., of Memorial Sloan-Kettering Cancer Center, the study's principal investigator.

The researchers interviewed 141 AIDS patients at 3 sites in New York City during 1992 and 1993. Respondents were asked to rank several factors relating to attitudes concerning medicine in general and ZDV in particular. Participants were grouped into five categories on the basis of their ZDV usage history: short-term users (25 months or less), long-term users (more than 25 months), self-terminated users, doctor-terminated users, and never users.

Interviews revealed that long-term users were likely to view ZDV as a way to ward off infection and prevent hospitalization. In contrast, self-terminated users and never users were most likely to believe that ZDV caused adverse side effects and that medicine need not be taken as prescribed. Current ZDV users and those who had terminated use per doctor's orders were least likely to share this attitude.

Details are in "Zidovudine adherence in persons with AIDS: The relation of patient beliefs about medication to self-termination of therapy," by Meredith Y. Smith, Ph.D., M.P.A., Dr. Rapkin, Anne Morrison, M.D., and Sandra Kammerman, M.D., in the April 1997 Journal of General Internal Medicine 12, pp. 216-223.

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Special Populations

Addressing health care needs among the homeless must first take into account their subsistence needs

Meeting their basic needs for food, shelter, and safety takes up most of the day for homeless persons, who clearly give these tasks a higher priority than health care. In fact, frequent difficulty in maintaining subsistence is an important nonfinancial barrier to the use of health services for this population, concludes a study supported in part by the Agency for Health Care Policy and Research (HS06696 and T32 HS00046).

In this study, homeless individuals who usually had trouble finding shelter, enough to eat, clothing, a place to wash, and a place to use the bathroom in the past 30 days were one-third less likely to have a regular source of care (odds ratio, OR of .30) and almost twice as apt to have gone without needed medical care (OR of 1.7) than homeless persons without these difficulties. Subsistence difficulty had no impact on the likelihood of homeless persons having an outpatient visit or being hospitalized in the past year. However, the high rate of hospitalization among homeless adults is often for neglected illnesses that could have been avoided with timely early care, explains Lillian Gelberg, M.D., M.S.P.H., of the University of California, Los Angeles.

Dr. Gelberg and her colleagues analyzed a sample of homeless persons who were part of a larger RAND study on homelessness and found that 47 percent of the respondents "rarely or never" had a problem in meeting their subsistence needs; 32 percent sometimes had a problem; and 21 percent usually had a problem. Forty-four percent of the homeless persons reported a regular source of care, 31 percent had gone without needed medical care in the previous 12 months, 53 percent had an outpatient visit, and 14 percent had been hospitalized for a physical illness or injury in the previous year.

Any attempt to address the health care needs of the homeless must also take into consideration their unmet needs for food, clothing, shelter, and bathroom facilities, note the researchers. To overcome this barrier to care, they suggest locating walk-in clinics where the homeless congregate to receive subsistence services.

See "Competing priorities as a barrier to medical care among homeless adults in Los Angeles," by Dr. Gelberg, Teresa C. Gallagher, Ph.D., Ronald M. Andersen, Ph.D., and Paul Koegel, Ph.D., in the February 1997 issue of the American Journal of Public Health 87(2), pp. 217-220.

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