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Researchers examine equity of access to renal transplants and health status of transplant recipients

Due to the increased success of kidney transplants, transplantation has become the treatment of choice for many patients who have end-stage renal disease (ESRD). Unfortunately, donor kidneys remain in short supply. Because kidneys are allocated first to suitable candidates on local waiting lists, and because relatively few transplants are shared outside the local area where they are recovered, some ESRD patients have put themselves on waiting lists in more than one area.

A recent study supported by the Agency for Health Care Policy and Research (HS07538) examines the impact of a New York State ban on multiple listing for kidney transplants, while a second study supported by the same grant examines the health status of transplant recipients. A third article (AHCPR grant HS07782 and HS08532) looks at the practice of using antilymphocyte antibodies to prevent rejection of renal transplants. The studies are summarized here.

White, A.J., Ozminkowski, R.J., Hassol, A., and others (1998, June). "The effects of New York State's ban on multiple listing for cadaveric kidney transplantation." Health Services Research 33(2), pp. 205-222.

Compared with those on one kidney transplant waiting list, candidates for donor kidneys listed on two or more waiting lists tend to spend significantly less time waiting for a transplant. However, many people who need a kidney lack the financial resources to pursue a multiple list option, which involves the cost for transportation of a donor kidney to the local center and part of the costs of a second pretransplant evaluation.

To prevent this practice from reducing equal access to kidney transplants, the State of New York enacted a law in 1990 prohibiting organ procurement organizations (OPOs) in the State from accepting individuals on their waiting lists who are already on a list at any other OPO in the State.

This ban was associated with a 66 percent reduction in the rate of multiple listings for New York patients and an 87 percent decline in multiple listing at in-State transplant centers. Nevertheless, simulation results suggest that banning multiple listing is not likely to greatly affect waiting times. For instance, the median waiting time for blacks would have declined by only about 3 weeks; for Latinos and individuals living in low-income areas, the wait would be about 2 weeks less. Waiting times would have increased by about 1 week for those in high-income areas and by about 2 weeks for those from more highly educated communities.

The researchers recommend consolidating some of the smaller waiting lists into larger regional lists to alleviate transplant access inequities and improve matching of donor organs to transplant recipients. They used waiting list files from the Organ Procurement and Transplantation Network, the Health Care Financing Administration's Medicare Program Management and Medical Information System, and U.S. Census Public Use Files to estimate the impact of the ban on the odds of multiple listing and allocation of donor kidneys.

Ozminkowski, R.J., White, A.J., Hassol, A., and Murphy, M. (1997, Fall). "General health of end stage renal disease program beneficiaries," Health Care Financing Review 19(1), pp. 121-144.

A patient's health status following renal transplantation depends on many factors. However, older people, Hispanics, and lower-income individuals tend to have poorer health status than others following renal transplantation, concludes this study. The researchers used the SF-36 health status questionnaire in a telephone survey of a national sample of 515 ESRD patients in the United States whose first ESRD service was obtained in early 1992. Survivors were surveyed again in mid-1995. All patients had higher mean scores for social and role functioning and mental health scales than for health status scales more closely related to physical health and vitality. Transplant recipients who were older and had lower incomes were more likely to have lower health status in certain areas. For example, the mean physical functioning score was 16 points lower for those 60 to 69 years of age than for people aged 18 to 34 and 39 points lower for role limits resulting from physical problems. People with incomes of $20,001 to $39,999 had mean general mental health scores that were 10 points lower and those with household incomes of $10,001 to $19,999 had mean mental health scores 20 points lower than those with incomes greater than $40,000.

However, for those with a functioning transplant, household income was unrelated to health-status dimensions that addressed physical functioning, bodily pain, general health perceptions, vitality, social functioning, and role limits resulting from emotional problems. Regression analysis showed no differences in health status among blacks, whites, Asians, and other patients; however, health status tended to be worse among Hispanic transplant recipients.

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Outcomes/Effectiveness Research

Many victims of major trauma are significantly disabled 6 months after injury

Victims of major trauma as a whole are a significantly disabled group 6 months after the trauma, with only 11 percent back to the quality of well being (QWB) they had prior to the traumatic injury. Those most likely to have lower quality of life 6 months after injury are those who suffered postinjury depression, posttraumatic stress disorder, or serious extremity injury and those who had a longer hospital stay, says a study supported by the Agency for Health Care Policy and Research (HS07611).

The Trauma Recovery Project, led by Troy L. Holbrook, Ph.D., of the University of California, San Diego, prospectively examined functional outcomes after major trauma in 1,048 adults aged 18 and older at the time of discharge from one of four trauma center hospitals in San Diego and again 6 months following their injury. The researchers measured functional outcomes before and after injury using the QWB scale (ranging from 0 for death to 1.000 for optimum functioning) and a standard activities of daily living (ADL) scale (ranging from 13 for full functioning to 47 for maximum dysfunction). Most of the trauma patients were white (52 percent) males (70 percent) with blunt injuries (85 percent) and a mean hospital stay of 7 days.

QWB scores (which measure mobility, physical activity, and social activity) before injury reflected the norm for a healthy adult population (mean of 0.81). However, QWB scores reflected significant functional limitation at discharge (mean of 0.401) and at 6-month followup (0.633). In fact, only 11 percent of patients 6 months after injury had QWB scores above 0.800. In contrast, ADL scores showed only moderate dysfunction at discharge (mean of 30) and at 6-month followup (mean of 15). The authors conclude that the QWB yields a more sensitive assessment of functional status of trauma victims than traditional ADL instruments.

More details are in "Outcome after major trauma: Discharge and six month followup results from the trauma recovery project," by Dr. Holbrook, John P. Anderson, Ph.D., William J. Sieber, Ph.D., and others, in the August 1998 Journal of Trauma 45(2), pp. 315-324.

Survival of extremely small and premature newborns has increased, but one in four or five survivors has a major disability

Today, more than 40 percent of extremely small and extremely immature infants can be expected to survive, due in large part to advances in treatment that have occurred over the past 20 years. However, one of every four or five of these infants has a major neurodevelopmental problem such as cerebral palsy, mental retardation, blindness, or deafness, according to a study supported by the Agency for Health Care Policy and Research (HS08385) and conducted by the Patient Outcomes Research Team (PORT) on strategies for care of the very low birthweight infant. Therefore, newborn intensive care of such infants requires a parallel commitment to providing the resources necessary for long-term assessment of their outcomes and the resources to optimize their quality of life.

Newborn intensive care (NIC) has been increasingly provided to extremely immature (EI) infants born at 26 weeks gestation or earlier and to extremely small (ES) infants with birthweights of 800 grams (less than 2 pounds) or less, whose survival was negligible before the development of NIC. John M. Lorenz, M.D., of Michigan State University and Sparrow Health System in Lansing, MI, and his colleagues analyzed mortality and disability data from 42 studies from the United States, Canada, Australia, the Netherlands, Israel, England, and Denmark that reported outcomes for 4,116 EI and 4,345 ES infants born from 1973 through 1994.

The researchers found that survival of these infants has increased about 2 percent per year from 1976 to 1990. However, the prevalence of major neurodevelopmental disabilities among survivors did not change over the same period. Mental retardation, the most common major disability, affected 14 percent of EI and ES survivors. Cerebral palsy affected 12 percent of EI survivors and 8 percent of ES survivors; 8 percent of EI and ES survivors were blind; and 3 percent of EI and ES survivors were deaf. Overall, 22 percent of EI survivors and 24 percent of ES survivors were classified as having at least one major disability.

Stable disability rates combined with increasing survival rates among EI and ES newborns have resulted in a steadily increasing number of survivors with disabilities. At the same time, the number of survivors without major disabilities has increased in parallel, note the authors.

Details are in "A quantitative review of mortality and developmental disability in extremely premature newborns," by Dr. Lorenz, Diane E. Wooliever, R.N., N.N.P., James R. Jetton, B.A., and Nigel Paneth, M.D., M.P.H., in the May 1998 Archives of Pediatric and Adolescent Medicine 152, pp. 425-435.

Repeat knee replacement surgery is uncommon

Each year about 100,000 Medicare patients undergo knee replacement (KR) surgery to alleviate knee pain and dysfunction associated with severe arthritis of the knee, a condition that is especially prevalent among the elderly. For elderly people who undergo KR surgery, the likelihood of having to undergo the procedure again within 2 to 4 years for the same knee is slight, concludes a study by the Patient Outcomes Research Team (PORT) on total knee replacement. The PORT was led by Deborah A. Freund, Ph.D., M.P.H., of Indiana University, and supported by the Agency for Health Care Policy and Research (HS06432).

Knee replacement offers substantial benefits for about 90 percent of patients undergoing the surgery, with few medical or surgical complications, points out lead author David A. Heck, M.D. The researchers examined data on all primary and revision knee replacements that were performed on Medicare patients throughout the United States between 1985 and 1990 to determine the chance of repeat surgery within 2 to 4 years following initial KR surgery. They found that more than 200,000 hospitalizations for primary KRs were performed, with 2.2 percent of them requiring revisions within 2 years, 3.2 percent within 3 years, and 4.2 percent within 4 years. Infection as well as use of a prosthesis, loosening, instability, dislocation, or breakage are the most common reasons for revision KR.

In this study, the following factors increased the chance of another KR surgery within 2 years: (1) male sex (suggesting that men place more demands on their knee prosthesis), (2) younger age (younger patients also may place greater demands on their artificial joints than do older patients), (3) longer length of hospital stay for the primary KR, (4) other medical problems diagnosed during the primary KR hospitalization, (5) unspecified arthritis type, (6) surgical complications during the primary KR surgery, and (7) primary KR performed at an urban hospital. The average age at the time of primary KR was 74 years, with an average length of hospital stay for initial KR surgery of 12.5 days; 2.2 percent of patients had surgical complications.

Details are in "Revision rates after knee replacement in the United States," by Dr. Heck, Catherine A. Melfi, Ph.D., Lorri A. Mamlin, M.P.H., and others, in Medical Care 36(5), pp. 661-669, 1998.

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Elderly Health/Long-term Care

Elderly and disabled people with psychiatric problems are less satisfied with health care than others

A recent study found that aged and disabled Medicare beneficiaries with psychiatric disorders are significantly less likely than those without disorders to be satisfied with the overall quality of their health care. This group is particularly apt to be dissatisfied with followup care and physicians' concern for their overall health. However, it's not clear whether psychiatric impairment biases their assessments or whether these patients actually receive lower quality of care than similar patients without psychiatric problems, conclude Harvard Medical School researchers.

In a study supported in part by the Agency for Health Care Policy and Research (National Research Service Award training grant T32 HS00020), the researchers used data from the 1991 Medicare Current Beneficiary Survey to examine the relationship between psychiatric disorders and care satisfaction in a national sample of elderly and disabled patients. These patients rated the health care they received during a mean of six to eight doctor visits over the course of the year. Psychiatric disorders ranged from affective, anxiety, and psychotic disorders to organic, substance abuse, and/or personality disorders.

The differences between patients with psychiatric disorders and those without such problems were significant but small. For instance, 82 percent of disabled Medicare beneficiaries with psychiatric disorders were satisfied with the overall quality of care they were receiving, compared with 90 percent of disabled patients without psychiatric disorders. Among aged patients, 91 percent of those with psychiatric disorders were satisfied, compared with 95 percent of those without psychiatric disorders.

One interpretation of these findings is that Medicare beneficiaries with psychiatric disorders receive a lower quality of care, a possibility that warrants further investigation, note the researchers. On the other hand, patient satisfaction surveys are often used to evaluate and compare health plans. If psychiatric disorders do bias patient ratings of care, then researchers should adjust for casemix when comparing satisfaction ratings across health plans. Otherwise, health plans that cover a higher proportion of patients with psychiatric disorders could be unfairly judged and penalized.

See "The influence of psychiatric disorders on patients' ratings of satisfaction with health care," by Richard C. Hermann, M.D., M.S., Susan L. Ettner, Ph.D., and Robert A. Dorwart, M.D., M.P.H., in Medical Care 36(5), pp. 720-727, 1998.

Use of restraints in nursing homes depends in part on the number of residents and the nurse-resident ratio

The 1987 Nursing Home Reform Act directed nursing homes to reduce their use of physical restraints; it also detailed nursing home residents' rights to be free of physical and chemical restraints used simply for discipline or convenience. As a result, the number of restraint-free homes increased nationwide from 1 percent in 1989 to 8 percent by 1995. Restraint-free homes differ in several ways from homes that use restraints, concludes a study supported in part by the Agency for Health Care Policy and Research (National Research Service Award training grant HS00011).

Restraint-free homes are 30 percent more likely to have a high ratio of full-time equivalent (FTE) RNs per resident than homes that use restraints. Restraint-free homes also have a lower average occupancy rate of 68 percent compared with an overall rate of 87 percent in other facilities. Restraint-free homes also are more likely to have residents less in need of restraint; that is, their residents have fewer problems in performing activities of daily living, and the homes have a lower average number of residents who are bowel or bladder incontinent.

Restraint-free homes also differ in organizational characteristics, according to the study's authors, Nicholas G. Castle, Ph.D., and Barry Fogel, M.D., of Brown University. They are more likely than other homes to be not-for-profit facilities located in urban and more competitive areas, to be smaller, and not to be members of chains (perhaps suggesting that change can be delayed in bureaucratic organizations such as nursing home chains). Restraint-free homes are more likely to have other special care units but are less likely to have special care units for Alzheimer's patients. These findings are based on analysis of nationally representative data from the 1995 On-Line Survey and Certification of Automated Records and the 1995 Area Resource File which contains data on 15,074 nursing homes.

For details, see "Characteristics of nursing homes that are restraint free," by Drs. Castle and Fogel, in The Gerontologist 38(2), pp. 181-188, 1998.

Age and severity of urine loss most affect quality of life among older adults with incontinence

The quality of life (QOL) of incontinent adults 60 years of age and older seems to be affected more among those who are younger and those with the most urine leakage per incident, concludes a study supported by the Agency for Health Care Policy and Research (HS08716). More elderly sufferers of incontinence may have other conditions that also affect their quality of life and may have adapted psychologically and behaviorally to the urine loss, explains Elizabeth Dugan, Ph.D., of Wake Forest University School of Medicine.

Dr. Dugan and her colleagues conducted a telephone survey with 435 incontinent adults 60 years of age and older. They used the short forms of the Urinary Distress Inventory (UDI-6) and Incontinence Impact Questionnaire to evaluate incontinence-specific measures of QOL, such as frequency and amount of urine lost, number of voids per day, and mobility difficulty and to ascertain the current impact of urine loss and associated distress. They also asked questions about general QOL.

The impact of incontinence on daily life was greater for those who were younger, had more days in bed due to health problems, lost more urine per episode, had more frequent urinary accidents, had more voids per day, and had more nighttime voids. A person with larger amounts of urine loss per accident had nearly twice the odds of experiencing a negative impact of urinary incontinence on daily life—for example, the ability to clean house, swim and walk, go to a concert, or travel by car—than someone with smaller amounts of urine lost per accident.

People with more education were more likely than others to indicate a positive rating for their general health. Overall, higher rates of life satisfaction were related to having more education, fewer days in bed due to health problems, fewer days in the previous month of feeling less well than usual, and small amounts of urine lost. The researchers suggest that to assess or track current symptom distress, a condition-specific measure such as the UDI-6 is more appropriate than a generic measure. If, however, an indication of overall well-being is needed, generic measures will suffice.

See "The quality of life of older adults with urinary incontinence: Determining generic and condition-specific predictors," by Dr. Dugan, Stuart J. Cohen, Ed.D., Deirdre Robinson, M.D., and others in Quality of Life Research 7, pp. 337-344, 1998.

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Dental Research

Malpractice laws have mixed effects on dental practices

The number of malpractice claims against dentists more than doubled between 1988 and 1992, during which time 7 of every 100 dentists had a formal malpractice claim filed against them. Yet many State malpractice laws, whether they are pro-dentist or pro-plaintiff, have mixed, counter-theoretical, small, or statistically insignificant effects on dentists' practice behavior, finds a study supported by the Agency for Health Care Policy and Research (HS06554). For example, it shows a mixed effect of certain laws on dentists' quality-of-care practices, such as examination and consultation behavior, and time spent in certain procedures targeted at improving outcome and reducing risk.

Some pro-dentist malpractice laws did not consistently lead to less careful dental practice, nor did certain pro-plaintiff laws lead to more careful practices, explains Peter Milgrom, D.D.S., of the University of Washington. The researchers mailed a survey to 3,048 randomly selected general dentists in the United States on their practice behavior and malpractice experience between 1988 and 1992. They used State statutes and appellate court decisions to determine State malpractice laws and climate and then correlated malpractice laws with dentists' quality of care practices.

Malpractice insurance status, the claims experience of individual dentists, and the specific legal provisions prevailing in a State explained only a small portion of the variation in individual dentist quality-of-care behavior. Certain pro-dentist liability laws—such as mandatory pretrial screening, allowing offsets to damages for collateral sources (i.e., other insurance coverage, paid sick leave for lost work time), and allowing periodic payment of damages—were correlated with less careful dental practices, such as fewer complete new patient pretreatment examinations. Other pro-dentist liability laws—such as the presence of binding arbitration, presumption of informed consent, and limits on damage recovery—were positively associated with frequency of risk-reducing procedures.

The researchers note that it was particularly difficult to distinguish differences across States in the cumulative tilt (i.e., either pro-dentist or pro-regulation) of their liability rules from differences in whether or not particular States had enacted pro-dentist tort reforms. On balance, there appeared to be no consistent relationship between State malpractice liability rules and quality of care, concludes Dr. Milgrom.

See "The incentive effects of malpractice liability rules on dental practice behavior," by Douglas A. Conrad, Ph.D., Dr. Milgrom, Coralyn Whitney, Ph.D., and others, in Medical Care 36(5), pp. 706-719, 1998.

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