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Does publicly provided home care substitute for family care?

The median age of the U.S. population has been steadily rising, with the elderly segment of the population expected to double by the year 2030. These demographic changes promise to generate an unprecedented increase in the demand for long-term care. Concerns about these trends and the high cost of institutional care have motivated the search for approaches to meeting the long-term care needs of the elderly population while maintaining them in the community.

One such approach entails extending public long-term care financing to support formal (paid) care provided in the home. Financing of formal home care remains limited, however, because of policymakers' concerns that publicly provided home care will substitute for, rather than supplement, family care currently provided at no direct cost to the Government. This may not necessarily be the case, however. Results from a recent study by the Agency for Health Care Policy and Research suggest that the degree of substitution, defined as overall displacement of informal caregiving efforts by subsidized formal care, appears to be small.

Liliana E. Pezzin, Ph.D., of AHCPR's Center for Cost and Financing Studies, and her colleagues Peter Kemper, Ph.D., and James Reschovsky, Ph.D., both formerly with AHCPR and now with the Center for Studying Health System Change, conducted the study. They used data from a large social experiment, the National Channeling Demonstration project, to analyze the extent to which public financing of formal home care would reduce the provision of family care directly—through its effects on informal care received by those in a given living arrangement—and indirectly, through its effects on living arrangement changes.

The study showed that providing public home care resulted in only small reductions (4.2 hours per week) in the overall amount of care provided by informal caregivers. The reduction in the amount of informal care was dominated by the direct effect on hours of care assuming no change in living arrangement. In fact, about 70 percent of the estimated reduction in overall hours of care was due to a decrease in the number of resident informal hours. These results suggest that policymakers concerned with the potential substitution of subsidized formal for informal care should focus more on specific measures designed to minimize caregivers' behavioral responses—for example, through case management guidelines on informal and respite care—rather than on discouraging effects due to living arrangement changes.

Although the program did not have a substantial effect on informal caregiving hours, the results indicated a sizable and statistically significant effect of the intervention on living arrangement choices of unmarried elderly persons. Channeling's more generous intervention increased the probability of independent living by 7.1 percentage points relative to those individuals not receiving the subsidy (control group). This increase was associated with a corresponding significant reduction of 2.4 percentage points in the probability that unmarried elderly persons would live with others and a 4.7 percentage point reduction in the probability of living in a nursing or personal care home.

See "Does publicly provided home care substitute for family care?" by Drs. Pezzin, Kemper, and Reschovsky, in The Journal of Human Resources 31(3), pp. 650-676, 1996. Reprints (AHCPR Publication No. 97-R011) are available from the AHCPR Publications Clearinghouse.

Having close family substantially reduces the risk of nursing home admission for the elderly

Nursing home care costs were about $3,200 per month for each resident and totaled $70 billion for the Nation in 1993. Avoiding nursing home admission hinges on ones family support. Elderly persons who are married have about half the risk of entering a nursing home as those who are not married. Those with at least one daughter or sibling reduce their chance of entering a nursing home by about one-fourth, according to a recent study supported in part by the Agency for Health Care Policy and Research.

On the other hand, sons appear to reduce the risk of admission for mothers but not for fathers. This may be due in part to the fact that sons typically do not supply care directly to a frail parent but instead offer financial assistance or help with bureaucratic tasks. This approach may be less palatable to elderly fathers than mothers, explains Vicki A. Freedman, Ph.D., formerly of AHCPR and now with RAND.

Dr. Freedman used the New Haven Established Populations for Epidemiologic Studies of the Elderly (EPESE) database, which has collected information since 1982 on nursing home stays by community-dwelling elderly persons, to examine the relationship between family structure and the risk of first nursing home admission. By 1989, 22 percent of the elderly at risk for their first nursing home admission had entered a nursing home, another 33 percent had died with no institutional experience, and 45 percent were still alive and had not entered a nursing home. Even after controlling for differences in health, demographic, and economic characteristics of the elderly, having a spouse, daughter, or sibling significantly reduced the risk of nursing home entry. Being married reduced the risk of entering a nursing home by 41 percent, having at least one daughter reduced the risk by 27 percent, and having at least one living sibling reduced the risk by 21 percent.

Other factors also affected the risk of nursing home entry. Persons who were limited in their ability to carry out activities such as dressing and eating, who considered themselves in poor health, and those who had poor cognitive functioning had a markedly increased risk of nursing home admission. Whites had nearly twice the risk of nursing home admission as minorities. However, sex and income had small and nonsignificant effects on the risk of nursing home admission.

Details are in "Family structure and the risk of nursing home admission," by Dr. Freedman, in the Journal of Gerontology: Social Sciences 51B(2), S61-S69, 1996. Reprints (AHCPR Publication No. 97-R010) are available from the AHCPR Publications Clearinghouse.

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Women's and Family Health

Rural physicians use fewer health resources than urban doctors to care for low-risk obstetric patients

Compared with urban family physicians (FPs) and obstetricians (OBs), rural FPs and OBs use fewer health care resources, such as tests and procedures, when treating low-risk pregnant women, according to a study supported in part by the Agency for Health Care Policy and Research (HS06166). The major differences are less use by rural physicians of costly epidural anesthesia, shorter hospital stays, and fewer tests for sexually transmitted diseases (STDs), which have been suggested but not recommended by the American Academy of Obstetricians and Gynecologists (ACOG).

On the other hand, rural physicians tend to use most resources at the same rates, including the same number of clinically important procedures, such as cesarean sections, and have similar birth outcomes compared with urban physicians. This indicates similar quality of obstetric care in rural and urban areas, according to researchers at the WAMI Rural Health Research Center at the University of Washington, Seattle.

The researchers studied health resource use by a stratified random sample of rural and urban OBs and FPs in Washington State, using medical record data of their low-risk obstetric patients. Both rural OBs and FPs were significantly more likely than their urban counterparts to use local and pudendal anesthesia and less likely to use epidural anesthesia during vaginal deliveries. For cesarean deliveries for both specialties, rural physicians on average provided far fewer epidurals and more spinal and general anesthesia than urban physicians.

The researchers point out that epidural anesthesia is probably less available in rural hospitals because fewer anesthesia personnel are available. Fewer prenatal tests for STDs by rural physicians may be associated with inadequate training, heavy workload, or that they have more intimate knowledge of their patients and the area.

Urban OBs used 10.4 percent more overall, 21 percent more prenatal, and 8 percent more intrapartum health resources in their care of women than did rural OBs. Urban FPs used 6 percent more total and 10 percent more intrapartum resources than rural FPs, but prenatal care differences were insignificant. Most of the urban-rural differences in prenatal care for OBs were accounted for by resource use connected with visits to the hospital, although there were small significant differences for consults and referrals, blood and urinalysis tests, and hematology work.

For more information, see "Rural and urban differences in physician resource use for low-risk obstetrics," by L. Gary Hart, Ph.D., Sharon A. Dobie, M.C.P., M.D., Laura-Mae Baldwin, M.D., M.P.H., and others, in the October 1996 issue of HSR: Health Services Research 31(4), pp. 429-452.

Delays in beginning prenatal care are unrelated to the number of available obstetricians

Women living in areas with only a few obstetric providers are no more apt to delay prenatal care until after the fourth month of pregnancy than women in areas with numerous obstetricians, according to a study supported in part by the Agency for Health Care Policy and Research (HS07321). Apparently, obstetrician availability does not affect when women decide to begin prenatal care, concludes Joyce M. Piper, Dr.P.H.

Dr. Piper and her colleagues at Vanderbilt University retrospectively analyzed linked birth/death certificates in the state of Tennessee from 1989 through 1991. The researchers found that of 209,171 births, 13 percent of mothers had their first prenatal care visit after the fourth month of pregnancy. Women who lived in counties with less than five obstetricians per 10,000 women of childbearing age had slightly increased odds of delayed onset of prenatal care. However, women who lived in counties with no obstetricians had less risk of delaying the start of prenatal care than women in counties with four obstetricians per 10,000 women of childbearing age (odds ratio [OR] of 1.18 vs. 1.29; 1 is equal odds). Also, outcomes of births in high and low physician density areas were about the same.

On the other hand, several maternal factors were associated with more than a doubling of the odds that a woman would delay starting prenatal care: age less than 16 years (OR of 3.72), lack of a high school education (OR of 3.16), three or more previous pregnancies (OR of 2.83), or being unmarried (OR of 2.34). After controlling for these maternal characteristics, the study still showed no consistent relationship between geographic access to obstetric services and delayed prenatal care. These findings suggest that efforts to change the distribution of obstetric providers will be beneficial only if they are undertaken in the context of programs specifically designed to improve the quality of prenatal care, conclude the researchers.

Details are in "Obstetric care provider density and delayed onset of prenatal care," by Dr. Piper, Edward F. Mitchel, Jr., M.S., and Wayne A. Ray, Ph.D., in Medical Care 34(10), pp. 1066-1070, 1996.

Poor children are less likely than other children to receive needed mental health services

It has been estimated in previous studies that 12 to 20 percent of children in the United States suffer from mental health problems, but only 1 to 5 percent of them receive mental health care. Now, a recent study by the Agency for Health Care Policy and Research has shown that among children who experience mental health problems, poor children and adolescents are less likely than more well-to-do young people to obtain needed mental health services.

The study found that children with poor mental health in high-income families were more than three times as likely to visit a doctor for mental health problems than similar children in low-income families. The higher the family income, the greater the number of visits and greater likelihood of seeing a mental health specialist. These findings point to poverty as a significant barrier to obtaining needed mental health care services, according to Peter J. Cunningham, Ph.D., formerly of AHCPR and now with the Center for Studying Health System Change, and Marc P. Freiman, Ph.D., of AHCPR's Center for Cost and Financing Studies.

The researchers used data from the 1987 National Medical Expenditure Survey, a national survey of health care use by the U.S. civilian noninstitutionalized population, to examine use of mental health services and family income. They found that about 5 percent of children ages 6 to 17 used some type of health care (mostly outpatient) related to a mental health problem in 1987. Just over half of children receiving ambulatory care for a mental health problem in 1987 saw a mental health specialist. Children with poor mental health whose family income was $5,000 were estimated to have a 12 percent probability of using mental health services compared with a 37 percent probability for similarly disturbed children whose family income was $75,000. Also, among those with some ambulatory use, the less affluent children had an estimated 41 percent chance of seeing a specialist compared with a 64 percent chance for more affluent children.

A mother's use of mental health care also strongly influenced whether or not her children obtained such care. It is likely that this strong association reflects family problems and propensities, since children's emotional and behavioral problems are frequently related to family circumstances, conclude the researchers.

See "Determinants of ambulatory mental health services use for school-age children and adolescents," by Drs. Cunningham and Freiman, in the October 1996 HSR: Health Services Research, pp. 409-427. Reprints (AHCPR Publication No. 97-R033) are available from the AHCPR Publications Clearinghouse.

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Minority Health

Minority women with abnormal screening mammograms have later followup tests than white women

Breast cancer is the most common cancer diagnosed among women of all ethnic groups. But even though breast cancer deaths have decreased among white women in recent years, this has not been the case among minority women, despite similar increased rates of mammography screening. Less rigorous followup testing after an abnormal mammogram may explain why minority women have later-stage breast cancer at diagnosis and higher mortality rates than white women, according to a recent study.

The study found that minority women with abnormal screening mammograms had followup tests (another mammogram, ultrasound, fine-needle aspiration, or biopsy) on average about a week later than white women with abnormal mammograms. This suggests that there still may be barriers related to race/ethnicity that affect timely performance of these followup tests, note researchers from the University of California, San Francisco (UCSF).

Their study, which was supported in part by the Agency for Health Care Policy and Research (HS07373), included 317 women (aged 33 to 85 years) who had an abnormal screening mammogram between July 1993 and May 1994, and was based on records abstracted from the UCSF Mobile Mammography Screening Program. Even after accounting for patient characteristics such as presence of a palpable breast mass, family history of breast cancer, and median income, minority women took longer than white women to complete a diagnostic workup (a median of 19 vs. 12 days). This small difference had no impact on breast cancer stage at diagnosis or on mortality, but it occurred even when women's physicians were immediately notified of abnormal results. It is possible that larger and potentially more important racial/ethnic differences would be observed in clinical settings where reporting and followup procedures are not so complete.

It is not clear whether the delays in workup were caused by the patients or due to doctors or systems of care. For example, previous studies have shown that black and Hispanic women typically have longer delays from the time they notice breast symptoms to the time they first consult a doctor. Also, timely communication may be more difficult for some minority women for example, if their primary language is not English or if they receive most of their care through overburdened community and public health clinics. Finally, minority women may have poorer access to care, that is, they may be more apt to have public or no insurance, no regular care site or provider, and/or difficulty maneuvering within a system.

Details are in "Racial differences in timeliness of follow-up after abnormal screening mammography," by Sophia W. Chang, M.D., M.P.H., Karla Kerlikowske, M.D., Anna Napoles-Springer, M.P.H., and others, in the October 1, 1996, issue of Cancer 78(7), pp. 1395-1402.

South Central Los Angeles residents are much less likely to undergo surgery than other county residents

South Central Los Angeles (SCLA) has six times more blacks and half the median income of the rest of Los Angeles County. Not only do SCLA residents have much higher death rates from ischemic heart disease and cerebrovascular disease, but they also have five times fewer physicians and fewer hospital beds (1 per 2,000 vs. 1 per 280 persons) than other county residents. SCLA residents receive significantly fewer revascularization and other potentially life-saving procedures than other county residents, perhaps because of factors other than poverty that are associated with the SCLA community, conclude University of California, Los Angeles, researchers led by David M. Carlisle, M.D., Ph.D.

In a study supported in part by the Agency for Health Care Policy and Research, the investigators analyzed California hospital discharge data to assess use of eight surgical procedures by Los Angeles County residents over a 3-year period (1986 through 1988): coronary angioplasty, coronary bypass surgery, carotid endarterectomy, cesarean section, hysterectomy, transurethral prostatectomy (TURP), appendectomy, and mastectomy. Results showed that, without controlling for other factors, the use of four procedures was significantly lower in SCLA. For every 10,000 residents in other parts of the county, 15 angioplasties were performed compared with 9 for every 10,000 SCLA residents. Significant differences also were found for coronary bypass surgery (18 vs. 11 per 10,000 residents), carotid endarterectomy (7 vs. 3 per 10,000 residents), and cesarean section (274 vs. 212 per 1,000 deliveries).

After adjusting for differences in patient health status, availability of health resources (physician distribution and distance to the nearest hospital), and income, SCLA remained negatively associated with the use of all procedures studied, except for mastectomy and TURP. Even after controlling for SCLA's poverty, residence in SCLA remained a significant negative predictor of use for six of the eight procedures. One possible explanation, which is supported by a growing body of research, is the greater prevalence in SCLA of historically disenfranchised ethnic groups (blacks and Latinos), an effect likely to be complex and multifactorial, according to the researchers.

Details are in "The effect of race and ethnicity on the use of selected health care procedures: A comparison of South Central Los Angeles and the remainder of Los Angeles county," by Dr. Carlisle, Barbara D. Leake, Ph.D., Robert H. Brook, M.D., Sc.D., and Martin F. Shapiro, M.D., Ph.D., in the Journal of Health Care for the Poor and Underserved 7(4), pp. 308-322, 1996.

Adult-onset diabetes occurs much more often among minorities than whites

Most minority groups in the United States have higher rates of adult-onset diabetes (non-insulin-dependent diabetes mellitus, NIDDM) and more complications and death from the disease than do whites. In fact, diabetes should be treated as a public health problem among minorities, concludes a study supported by the Agency for Health Care Policy and Research (HS07397).

The heavier burden of NIDDM on minorities has been attributed to factors associated with "westernization," such as a high-fat, high-calorie, and low-fiber diet and little exercise; obesity, which is more prevalent among minority groups; and certain genetic factors. Yet the relative contributions of these and other socioeconomic factors are not well defined, according to a review of the scientific literature from 1976 to 1994.

The review shows that all minorities, except Alaska Natives, have NIDDM rates two to six times greater than those of white persons, as well as higher rates of serious complications. For instance, minority individuals suffer from six times more cases of diabetic nephropathy (kidney disease) than whites. Moreover, blacks, Hispanics, and American Indians have higher rates of diabetic retinopathy (damage to the blood vessels of the retina), which can impair vision. Blacks and Pima Indians who have diabetes also undergo more amputations than white diabetics (1.5 and 4 times more, respectively). These amputations are sometimes needed to curtail the spread of infections from ulcers that won't heal due to both peripheral vascular disease and constant reinjury that occurs because of lack of sensation in the feet. Finally, more minorities die from diabetes-related complications than whites.

Serious complications are more likely to develop from long-term and less well-controlled diabetes. Evidence reviewed for this study suggests that the average time from NIDDM onset to diagnosis was 7 years, with many patients already experiencing complications by the time their diabetes was diagnosed. In fact, 50 percent of diabetics identified in community surveys do not know they have diabetes. The researchers recommend diabetic screening of persons from minority groups, especially if they are overweight or have other risk factors, as well as dissemination of culturally sensitive diabetes education materials and cookbooks.

Details are in "Non-insulin-dependent diabetes mellitus in minorities in the United States," by Janette S. Carter, M.D., Jacqueline A. Pugh, M.D., and Ana Monterrosa, M.D., in the August 1, 1996 Annals of Internal Medicine 125(3), pp. 221-232.

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HIV/AIDS Research

Functional decline in persons with HIV disease is variable and episodic

Persons infected with the human immunodeficiency virus (HIV) that causes AIDS eventually reach a point when everyday tasks such as dressing and shopping become difficult. As their ability to function declines, they often must rely on home health care systems oriented toward the elderly, whose functional status is fairly stable. Yet the functional status of persons with HIV disease is variable and episodic, with periods of improvement and worsening, and with women showing the greatest decline in their ability to function over time, according to a study supported by the Agency for Health Care Policy and Research (HS06339).

Home care programs designed for the elderly may not be flexible enough for persons with HIV disease, note Stephen Crystal, Ph.D., and Usha Sambamoorthi, Ph.D., of Rutgers University. They conducted monthly followup interviews with 246 persons enrolled in New Jerseys Medicaid waiver program for persons with symptomatic HIV disease or AIDS from 1990 to 1991; 82 percent of study participants had AIDS. They collected data on functional status, race and sex, risk group, and diagnosis at study initiation to develop several models to account for decline in functional status. The functional status scale rated a persons ability to carry out 16 daily activities, ranging from rather complex tasks, such as taking care of medical paperwork, and relatively strenuous tasks such as housecleaning, to basic personal care tasks such as bathing, eating, and using the bathroom.

Results showed that on average, the persons studied were impaired in 5 of the 16 tasks. Although ability to function declined by about one-third of a task per month, inability to perform a task during a given month did not necessarily imply a similar inability the next month. Being female was associated with a significantly higher level of impairment (an additional 1.88 tasks), as was AIDS diagnosis (an additional 1.35 tasks), but race and risk group were not. These findings suggest the need for a flexible approach to the authorization and case management of home care or other long-term care services for patients with HIV disease. Over-servicing these patients would produce unnecessary costs and client dependence, but under-servicing would place them at risk, conclude the researchers.

For more details, see "Functional impairment trajectories among persons with HIV disease: A hierarchical linear models approach," by Drs. Crystal and Sambamoorthi, in the October 1996 HSR: Health Services Research 31(4), pp. 469-488.

San Francisco's most successful HIV prevention programs emphasize the messenger more than the message

The messenger is more important than the message when trying to prevent the spread of infection with the human immunodeficiency (HIV) virus among socially ostracized groups. At least that is the experience of the San Francisco programs that have been most successful in conveying the HIV prevention message to these typically distrustful groups.

The most successful programs, most of which were community-based, had several elements in common, according to a study supported by the Agency for Health Care Policy and Research (HS07610). First, they narrowly defined their target group (audience segmentation) by specific HIV risk factors, such as drug use, sexual orientation, ethnicity, age, and sex, to the extent that some groups focused their messages only on black, teenage runaway, male, drug-using, homeless prostitutes.

Second, they used members of the targeted group to convey the message (homophily), usually face-to-face, to establish a nonjudgmental relationship based on trust between messenger and target audience. For instance, recovering American Indian drug addicts discussed HIV prevention with American Indians currently using drugs. Third, prevention strategies were compatible with the targeted audience's perceived experiences, existing beliefs, and behavior. For instance, messages for at-risk Hispanics were in Spanish and were sensitive to Hispanic history and culture. Finally, the most successful programs collaborated with other programs to share resources and information.

Unlike other public health programs, the emphasis was not on message content but on establishing a relationship of trust with members of the target audience so that they would be receptive to the HIV prevention message, explains James W. Dearing, Ph.D., of Michigan State University, who led the 2-year study. The researchers surveyed the 49 HIV prevention programs in San Francisco that targeted socially ostracized groups to determine the extent to which these programs used strategies based on social marketing and diffusion-of-innovation concepts to deliver preventive health messages. They then interviewed 38 staff leaders who operated the most and least effective of the 20 most highly targeted programs to identify the most successful strategies.

For more information, see "Social marketing and diffusion-based strategies for communicating with unique populations: HIV prevention in San Francisco," by Dr. Dearing, Everett M. Rogers, Ph.D., Gary Meyer, Ph.D., and others, in the Journal of Health Communication 1, pp. 343-363, 1996.

Social, functional, and clinical factors affect hospitalization of persons with AIDS

Persons with AIDS (PWAs) who are minorities, homeless, have serious AIDS-related infections or poor neuropsychological status are more apt to be hospitalized than other persons with AIDS. These factors and other aspects of health-related quality of life (HRQL), such as functional status, may explain variations in hospital use better than clinical factors alone, concludes a study supported by the Agency for Health Care Policy and Research (HS06239).

It shows that PWAs were three times more likely to be hospitalized if they were homeless (odds ratio [OR] of 3.3; 1 is equal odds) or had severe AIDS-related, opportunistic infections, such as cytomegalovirus-induced pneumonia (OR of 2.7). Minority PWAs were twice as apt to be hospitalized (OR of 2.0), as were PWAs with poor cognitive functioning (OR of 1.9).

PWAs who were only moderately impaired in their ability to carry out basic daily living tasks were only slightly more likely than other persons with AIDS to be hospitalized (OR of 1.3). Among those persons who were hospitalized, total hospital days were influenced by system of care and neuropsychological status. These findings suggest that factors not listed in the medical chart need to be assessed along with clinical factors when considering care options for this group of patients, according to Joel S. Weissman, Ph.D., and Arnold M. Epstein, M.D., of Harvard Medical School, and their colleagues.

The researchers explored patterns of future hospitalization for more than 300 PWAs treated at three clinical sites (clinic, private group practice, and health maintenance organization) in Boston during 1990 and 1991. Using patient interviews, hospital bills, and medical charts, they developed statistical models associating disease burden, patient sociodemographic characteristics, health-related quality of life, use of prophylactic drugs, and system of care with the likelihood of future hospital admissions and total hospital days during a subsequent 4-month period.

Details are in "The influence of health-related quality of life and social characteristics on hospital use by patients with AIDS in the Boston health study," by Dr. Weissman, Paul D. Cleary, Ph.D., George R. Seage III, D.Sc., M.P.H., and others, in Medical Care 34(10), pp. 1037-1054, 1996.

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