Development and validation of an instrument to measure resources and support for chronic illness self-management: a model using diabetes

PURPOSE: Few comprehensive and practical instruments exist to measure the receipt of self-management support for chronic illness. An instrument was developed to measure resources and support for self-management (RSSM) for the survey component of the evaluation of the Robert Wood Johnson Foundation's Diabetes Initiative. It includes items to measure an ecological range of RSSM. This article describes the development and validation of the instrument, focusing on individuals' reported access to RSSM from providers and from nonclinical, social, and community sources. METHODS: Cross-sectional analyses of the second wave of a survey of participants in the Diabetes Initiative (68% response rate, n = 957) were used. RESULTS: Confirmatory factor analyses supported grouping the 17 items into 5 subscales, measuring key aspects of RSSM: individualized assessment, collaborative goal setting, enhancing skills, ongoing follow-up and support, and community resources (comparative fit index = 0.97, Tucker-Lewis fit index = 0.99, and root means square error of approximation = 0.06). The overall scale and 5 subscales were internally consistent (Cronbach alpha >or= .70) and were significantly, positively related to diabetes self-management behaviors, supporting their construct validity. CONCLUSIONS: This instrument shows promise for measuring RSSM. Although it was developed for diabetes programs, its ecological orientation and link to the broad framework of chronic care suggest broader application.     

Governance and management structures for community partnerships: experiences from the Robert Wood Johnson Foundation's Community Partnerships for Older Adults Program

PURPOSE: This article describes early efforts of four community partnerships in Boston, El Paso, Houston, and Milwaukee to address governance and management structures in ways that promote the sustainability of innovative community-based long-term care system improvements. The four communities are grantees of the Community Partnerships for Older Adults Program, a national initiative of the Robert Wood Johnson Foundation that fosters local partnerships to improve long-term care and supportive-services systems in order to meet the current and future needs of older adults. DESIGN AND METHODS: We examined community partnership approaches to governance and management, as well as evidence of the partnerships' influence in their communities, by using the conceptual framework of the community health partnerships typology developed by Shannon M. Mitchell and Stephen Shortell. RESULTS: Addressing governance and management issues was critical to the early evolution of community partnerships for older adults. Early partnership experiences, particularly with regard to local funders and media, provide evidence of emerging centrality (importance and influence in the community), which forecasts sustainability. Observation over a longer period is needed in order to see whether early successes will be sustained, particularly once original grant funding ends. IMPLICATIONS: Community partnerships for older adults can become influential positive forces but must invest in adequate governance and management structures early on.     

Work satisfaction and career aspirations of internists working in teaching hospital group practices

This paper presents data on the characteristics, work activities, job-related stress, work satisfaction, and career aspirations of 150 faculty and 595 housestaff physicians who regularly provide continuous primary care in 15 teaching hospital-based group practices. The faculty were young, board-certified generalists; they had been recruited from local training programs and spent the majority of their time seeing patients and supervising housestaff. Job satisfaction among faculty and housestaff was generally high. Dissatisfaction occurred most often with aspects of work over which physicians had little control. Although work-related stress was common, it was not related to job satisfaction. Compared with housestaff in traditional residency programs, housestaff enrolled in special Primary Care Training Programs reported significantly greater job satisfaction. For all housestaff, satisfaction with work in the group practice was consistently associated with decreased interest in subspecialty training. assisted in preparing this report. Received from the Department of Medicine and the School of Public Health, UCLA Center for the Health Sciences. Los Angeles. California. Supported by Grant #59082 from the Robert Wood Johnson Foundation. The views expressed herein do not necessarily represent those of the Robert Wood Johnson Foundation.     

Measuring the Quality of Colorectal Cancer Screening: The Importance of Follow-Up

Purpose As evidence mounts for effectiveness, an increasing proportion of the United States population undergoes colorectal cancer screening. However, relatively little is known about rates of follow-up after abnormal results from initial screening tests. This study examines patterns of colorectal cancer screening and follow-up within the nation's largest integrated health care system: the Veterans Health Administration. Methods We obtained information about patients who received colorectal cancer screening in the Veterans Health Administration from an existing quality improvement program and from the Veterans Health Administration's electronic medical record. Linking these data, we analyzed receipt of screening and follow-up testing after a positive fecal occult blood test. Results A total of 39,870 patients met criteria for colorectal cancer screening; of these 61 percent were screened. Screening was more likely in patients aged 70 to 80 years than in those younger or older. Female gender (relative risk, 0.92; 95 percent confidence interval, 0.9–0.95), Black race (relative risk, 0.92; 95 percent confidence interval, 0.89–0.96), lower income, and infrequent primary care visits were associated with lower likelihood of screening. Of those patients with a positive fecal occult blood test (n = 313), 59 percent received a follow-up barium enema or colonoscopy. Patient-level factors did not predict receipt of a follow-up test. Conclusions The Veterans Health Administration rates for colorectal cancer screening are significantly higher than the national average. However, 41 percent of patients with positive fecal occult blood tests failed to receive follow-up testing. Efforts to measure the quality of colorectal cancer screening programs should focus on the entire diagnostic process. Supported by the Robert Wood Johnson Foundation Clinical Scholars Program (Etzioni), Department of Veterans Affairs (VA) Health Services Research and Development (HSR&D), and National Cancer Institute Colorectal Cancer (CRC) Quality Enhancement Research Initiative (QUERI) Service Directed Research (Project # CRS 02-163). The views expressed in this article are those of the authors and do not necessarily represent the views of the Robert Wood Johnson Foundation or the Department of Veterans Affairs.     

A Roadmap and Best Practices for Organizations to Reduce Racial and Ethnic Disparities in Health Care

Over the past decade, researchers have shifted their focus from documenting health care disparities to identifying solutions to close the gap in care. Finding Answers: Disparities Research for Change, a national program of the Robert Wood Johnson Foundation, is charged with identifying promising interventions to reduce disparities. Based on our work conducting systematic reviews of the literature, evaluating promising practices, and providing technical assistance to health care organizations, we present a roadmap for reducing racial and ethnic disparities in care. The roadmap outlines a dynamic process in which individual interventions are just one part. It highlights that organizations and providers need to take responsibility for reducing disparities, establish a general infrastructure and culture to improve quality, and integrate targeted disparities interventions into quality improvement efforts. Additionally, we summarize the major lessons learned through the Finding Answers program. We share best practices for implementing disparities interventions and synthesize cross-cutting themes from 12 systematic reviews of the literature. Our research shows that promising interventions frequently are culturally tailored to meet patients' needs, employ multidisciplinary teams of care providers, and target multiple leverage points along a patient's pathway of care. Health education that uses interactive techniques to deliver skills training appears to be more effective than traditional didactic approaches. Furthermore, patient navigation and engaging family and community members in the health care process may improve outcomes for minority patients. We anticipate that the roadmap and best practices will be useful for organizations, policymakers, and researchers striving to provide high-quality equitable care.     

Geriatric care approaches in health maintenance organizations.

The objective of this project was to describe geriatric care provided under Medicare-risk contracts in HMOs with established Medicare programs. These findings provided the basis for an invitational workshop, sponsored by the National Institute on Aging and the Robert Wood Johnson Foundation, to formulate a research agenda for geriatric care in HMOs. The case study method involved site visits to seven HMOs by a physician with expertise in geriatrics, a managed care specialist, and a program development specialist. Representatives from the HMOs included senior executive officials, physicians recognized for providing and promoting geriatric care, research and program development staff, and various clinical staff including pharmacists, geriatric nurse practitioners, nurses, and social workers. The most frequently encountered geriatric care programs were categorized by the following six objectives: (1) identifying high risk patients, (2) assessing multi-problem patients, (3) treating multi-problem patients, (4) rehabilitating patients following acute events, (5) reducing medication problems, and (6) providing long-term care and home health care. Unique programs identified from these site visits included screening methods for new enrollees, approaches to comprehensive geriatric assessment, use of skilled nursing facilities for intensive rehabilitation and postacute care, and drug profiling and review. Utilization of geriatric nurse specialists and programs aimed at coordination with social services were pervasive in many of these HMOs. Workshop participants proposed several research and demonstration projects in all six areas. Overall consensus emerged that HMOs with Medicare-risk contracts provide a valuable setting for experimentation in geriatric care. Given the current health policy emphasis on managed care and capitated payment methodologies, geriatric care research in HMOs should be a high priority.     

Long-term care preferences of hospitalized persons with AIDS

Objective:To determine in a cohort of hospitalized persons with AIDS: 1) their preferences for various postdischarge long-term care settings, 2) the postdischarge settings recommended by primary care providers (doctors, nurses, and social workers), and 3) the impact of these views on the resulting discharge dispositions. Design:Prospective cohort study. Setting:Medical wards of five Seattle tertiary care hospitals. Participants:120 consecutive hospitalized persons with AIDS and their primary care providers. Measurements and main results:Although 70 (58%) of the patients found care in an AIDS long-term care facility acceptable, 87 (73%) preferred home care. Thirty-eight (32%) of the cohort were appropriate for long-term care after hospitalization, according to primary care providers. Eleven of the 38 patients deemed appropriate for long-term care were discharged to long-term care settings; among these, three had preferred home care. Likelihood of discharge to long-term care settings increased if patients found it acceptable (OR=7.1; 95% CI=3.2, 15.5), if they did not prefer home care (OR=7.7; 95% CI=4.7, 13.5), and if providers judged them to be appropriate for long-term care (OR=29; 95% CI=13, 64). In unstructured interviews, availability of emotional and medical support and privacy emerged as important factors to persons with AIDS considering long-term care. Conclusions:Hospitalized persons with AIDS willingly express their desires for various postdischarge care settings. A majority find long-term care in AIDS facilities acceptable, although they generally prefer home care. Discharge disposition is associated with acceptability, preference, and appropriateness for long-term care. Presented in part at the Vth International Conference on AIDS, Montreal, Quebec, Canada, June 5, 1989. Also presented in part at the 14th annual meeting of the Society of General Internal Medicine, Seattle, Washington, May 1–3, 1991. Supported in part by the Northwest Health Services Research and Development Field Program (Seattle VA Medical Center) and the Seattle/King County Department of Public Health, AIDS Prevention Project. Dr. McCormick was a fellow in the Robert Wood Johnson Clinical Scholars Program during this project. The opinions stated herein are those of the authors and may not represent the views of the Robert Wood Johnson Foundation or the Department of Veterans Affairs.     

The relative risk of myocardial infarction in patients who have high blood pressure and non-cardiac pain

The authors conducted a population-based case-control study to determine the risk of myocardial infarction in patients who reported angina-like symptoms. The cases studied were those of patients who had high blood pressure and had sought treatment in 1984 with myocardial infarction as the first manifestation of coronary artery disease. Controls, a random sample of patients who had hypertension, were frequency-matched to cases by age and gender. Blind to case-control status, the authors reviewed the medical records of the 32 cases and 64 controls for reports of angina-like symptoms. While controls reported such symptoms at a constant rate, the events for the cases clustered near their infarctions. When a patient with hypertension sought medical advice for angina-like symptoms, the risk of infarction within 30 days was 14.2 (95% confidence interval, 2.8 to 71), and after 30 days it fell to 1.03. Among patients who have high blood pressure but no history of angina, presentations with prodromal symptoms in the primary care setting are so common that only about one in 100 such visits actually heralds myocardial infarction. Presented at the National Meeting of the Robert Wood Johnson Clinical Scholars Program, Scottsdale, AZ (October 1986) and the National Meeting of the American Federation for Clinical Research, San Diego, CA (May 1987). Supported in part by a grant from the Robert Wood Johnson Foundation, Princeton, NJ, and by the Health Services Research and Development Program, Veterans Administration Medical Center, Seattle, WA. The opinions, conclusions, and proposals in the text are those of the authors and do not necessarily represent the views of the Robert Wood Johnson Foundation or the VA Medical Center.     

Attitudes of house officers toward the autopsy

Study Objective:To assess the attitudes of house officers in internal medicine and pathology about the value and use of the autopsy. Design:Self-administered multiple-choice questionnaire. Setting:Two New York City urban teaching hospitals. Subjects:112 internal medicine and 37 pathology house officers who were on site during the survey period. Main results:Most internal medicine house officers (86%) felt that the autopsy rate was too low and needed to be increased. The most common reason the residents cited for the low rate was the reluctance of families to grant permission. A majority of medicine housestaff (78%) felt they needed more instruction on how to ask for an autopsy, and 34% had never received feedback from the pathology department on autopsy results. Most pathology residents (94%) felt the autopsy rate was too low; the most common reasons they cited for the low rate were reluctance of clinicians to request permission and clinicians’ fears of being sued for malpractice. Conclusions:House officers in internal medicine and pathology agreed that autopsies should be performed more frequently, and identified problems in obtaining autopsies that should be addressed by educational, organizational, and regulatory strategies. Supported in part by a grant from the Robert Wood Johnson Foundation. The opinions and conclusions herein are those of the authors and do not necessarily represent the views of the Robert Wood Johnson Foundation.     

Problems of the health-impaired elderly: a foundation's experience in geriatrics

Elderly people, particularly those over age 75, are subject to problems of access to needed health services, of the appropriateness of these services in relation to their needs, and of increasing infirmity, disability and dependency, with loss of their natural support systems. The proportion of health expenditures deployed to deal with the institutionalization and long-term requirements of elderly people is increasing in a national climate characterized by tightening constraints on public expenditures for health care under Medicare and Medicaid. The Robert Wood Johnson Foundation has accepted objectives and roles to find better ways to use what we already know to improve elderly people's access to health care, to improve their functional effectiveness, and to make their health care more affordable. The results of some of the programs it has supported represent innovative approaches and demonstrate ways in which we may accomplish these objectives.     

Public-private partnerships: the Connecticut model for financing long-term care.

Responses to the growing crisis in long-term care financing have included efforts to negotiate partnerships between the private and public sectors for the purpose of developing innovative models for long-term care insurance. One such set of models has been encouraged by support from the Robert Wood Johnson Foundation's "Long Term Care Insurance Program" grants. The Connecticut Partnership for Long Term Care uses a cooperative approach to encourage the development of private sector long-term care insurance products that are integrated with Medicaid eligibility determinations. The Connecticut model is described, accompanied by a history of its development, and a comparison is made with other models currently under consideration by national policy analysts.     

Primary care and receipt of preventive services

OBJECTIVE: To examine whether health insurance, a regular place of care, and optimal primary care are independently associated with receiving preventive care services. DESIGN: A cross-sectional telephone survey. SETTING: Population based. PARTICIPANTS: Probability sample of 3,846 English-speaking and Spanish-speaking women between the ages of 18 and 64 in urban California. INTERVENTIONS: Women were asked about their demographic characteristics, financial status, health insurance status, need for ongoing care, regular place of care, and receipt of blood pressure screening, clinical breast examinations, mammograms, and Pap smears. Women who reported a regular place of care were asked about four components of primary care: availability, continuity, comprehensiveness, and communication. MEASUREMENTS AND MAIN RESULTS: In multivariate analyses that controlled for differences in demographics, financial status, and need for ongoing care, having a regular place of care was the most important factor associated with receiving preventive care services (p<.0001). Having health insurance (p<.001) and receiving optimal primary care from the regular place of care (p<.01) further significantly increased the likelihood of receiving preventive care services. CONCLUSION: A regular source of care is the single most important factor associated with the receipt of preventive services, but optimal primary care from a regular place increases the likelihood that women will receive preventive care. Supported by Robert Wood Johnson Foundation grant 22907 and Agency for Health Care Policy Research (AHCPR) grant HSO7373. Dr. Bindman and Dr. Grumbach are Robert Wood Johnson Foundation Generalist Physician Faculty Scholars.     

Programs of the Robert Wood Johnson Foundation to develop minority medical careers

The Robert Wood Johnson Foundation (RWJF) is the nation's largest philanthropy devoted to health. The foundation long has been concerned about increasing diversity in the health professions. Between 1972 and 1981, grants totaling nearly $6.7 million were made to medical, medical/dental schools, or other educational organizations to support minority students. Funds enabled students who were interested in applying to medical or dental school to enroll in special preparatory courses. Most students were African American. One program, however, targeted US Puerto Rican students and other Hispanic students. Nearly 2500 students enrolled in these preapplication enrichment programs. Data reported to the foundation on medical or dental school acceptance for 1959 of these students indicated that 57% of students were successful. An additional $10.5 million in grants were awarded during this period: $2.5 million to provide scholarships for minority group medical students, $580,000 to support preceptorships with minority physicians/mentors, and $7.5 million to strengthen Meharry Medical College's Comprehensive Primary Care Health Science Program. In the early 1980s, the RWJF Board of Trustees considered a series of staff analyses, which resulted in additional direct support to historically black medical schools, including Meharry and those at Drew University and Morehouse College. These analyses also set the stage for two RWJF programs, the Minority Medical Faculty Development Program and the Minority Medical Education Program, which exist today. This article describes these programs, along with the more recent Health Professions Partners Initiative, and offers reflection and analysis about their impact on diversity in the medical profession.     

End-of-life decision making

OBJECTIVE: To identify the desired features of end-of-life medical decision making from the perspective of elderly individuals. DESIGN: Qualitative study using in-depth interviews and analysis from a phenomenologic perspective. SETTING: A senior center and a multilevel retirement community in Los Angeles. PARTICIPANTS: Twenty-one elderly informants (mean age 83 years) representing a spectrum of functional status and prior experiences with end-of-life decision making. MAIN RESULTS: Informants were concerned primarily with the outcomes of serious illness rather than the medical interventions that might be used, and defined treatments as desirable to the extent they could return the patient to his or her valued life activities. Advanced age was a relevant consideration in decision making, guided by concerns about personal losses and the meaning of having lived a “full life.” Decisionmaking authority was granted both to physicians (for their technical expertise) and family members (for their concern for the patient’s interests), and shifted from physician to family as the patient’s prognosis for functional recovery became grim. Expressions of care, both by patients and family members, were often important contributors to end-of-life treatment decisions. CONCLUSIONS: These findings suggest that advance directives and physician-patient discussions that focus on acceptable health states and valued life activities may be better suited to patients’ end-of-life care goals than those that focus on specific medical interventions, such as cardiopulmonary resuscitation. We propose a model of collaborative surrogate decision making by families and physicians that encourages physicians to assume responsibility for recommending treatment plans, including the provision or withholding of specific life-sustaining treatments, when such recommendations are consistent with patients’ and families’ goals for care. This research was partially funded by the Robert Wood Johnson Clinical Scholars Program. The views expressed above are those of the authors and do not necessarily reflect those of the Robert Wood Johnson Foundation.     

Deploying the chronic care model to implement and sustain diabetes self-management training programs

PURPOSE: The purpose of this project was to evaluate the utility of using the 6 elements of the chronic care model (CCM; health system, community, decision support, self-management support, clinical information systems, and delivery system design) to implement and financially sustain an effective diabetes self-management training (DSMT) program. METHODS: The University of Pittsburgh Medical Center (UPMC) uses all elements of the CCM. Partnerships were formed between UPMC and western Pennsylvanian community hospitals and practices; the American Diabetes Association DSMT recognition program provided decision support. A clinical data repository and reorganization of primary care practices aided in supporting DSMT. The following process and patient outcomes were measured: number of recognized programs, reimbursement, patient hemoglobin A1C levels, and the proportion of patients who received DSMT in primary care practices versus hospital-based programs. RESULTS: Using elements of the CCM, the researchers were able to gain administrative support; expand the number of recognized programs from 3 to 21; cover costs through increased reimbursement; reduce hemoglobin A1C levels (P < .0001), and increase the proportion of patients receiving DSMT through delivery in primary care (26.4% suburban; 19.8% urban) versus hospital-based practices (8.3%; P < .0001). CONCLUSIONS: The CCM serves as an effective model for implementing and sustaining DSMT programs.     

Policy progress for physician treatment of opiate addiction

Medical treatment of heroin addiction with methadone and other pharmacotherapies has important benefits for individuals and society. However, regulatory policies have separated this treatment from the medical care system, limiting access to care and contributing to the social stigma of even effective addiction pharmacotherapy. Increasing problems caused by heroin addiction have added urgency to the search for policies and programs that improve the access to and quality of opiate addiction treatment. Recent initiatives aiming to reintegrate methadone maintenance and other addiction pharmacotherapies into medical practice may promote both expanded treatment capacity and increased physician expertise in addiction medicine. These initiatives include changes in federal oversight of the opiate addiction treatment system, the approval of physician office-based methadone maintenance programs for stabilized patients, and federal legislation that could enable physicians to treat opiate addiction with new medications in regular medical practice. This work was assisted by a grant from the Robert Wood Johnson Foundation Substance Abuse Policy Research Program.     

Bridging cultural differences in medical practice

BACKGROUND: Cultural differences between doctors and their patients are common and may have important implications for the clinical encounter. For example, some Navajo patients may regard advance care planning discussions to be a violation of their traditional values. OBJECTIVE: To learn from Navajo informants a culturally competent approach for discussing negative information. DESIGN: Focused ethnography. SETTING: Navajo Indian reservation, northeast Arizona. PARTICIPANTS: Thirty-four Navajo informants, including patients, traditional healers, and biomedical health care providers. MEASUREMENT: In-depth interviews. MAIN RESULTS: Strategies for discussing negative information were identified and organized into four stages. Assessment of patients is important because some Navajo patients may be troubled by discussing negative information, and others may be unwilling to have such discussions at all. Preparation entails cultivating a trusting relationship with patients, involving family members, warning patients about the nature of the discussion as well as communicating that no harm is intended, and facilitating the involvement of traditional healers. Communication should proceed in a caring, kind, and respectful manner, consistent with the Navajo concept k’é. Reference to a third party is suggested when discussing negative information, as is respecting the power of language in Navajo culture by framing discussions in a positive way. Follow-through involves continuing to care for patients and fostering hope. CONCLUSIONS: In-depth interviews identified many strategies for discussing negative information with Navajo patients. Future research could evaluate these recommendations. The approach described could be used to facilitate the bridging of cultural differences in other settings. Presented at the annual meeting of the American Society for Bioethics and Humanities, Philadelphia, Penn, October 31, 1999. The views expressed in this paper do not necessarily reflect the views of the Robert Wood Johnson Foundation, the Indian Health Service, the Department of Veterans Affairs, or the Bioethics Institute of the Johns Hopkins University. This study was supported by the Department of Veterans Affairs, Veterans Health Administration, Health Services Research and Development Service (project IIR 93-131R). Dr. Carrese, who was a V.A. fellow in the Robert Wood Johnson Clinical Scholars Program (University of Washington) when this study was conducted, is a Robert Wood Johnson Generalist Physician Faculty Scholar.     

Sickle cell disease: Translating clinical care to low-resource countries through international research collaborations

The vast majority of the world’s population of children and adults with sickle cell disease (SCD) are born in low-resource settings, particularly in sub-Saharan Africa, the Caribbean, the Middle East, and India. As a result numerous well-established, cost-effective, and evidence-based strategies for managing SCD such as newborn screening, early education, vaccinations, screening for stroke prevention, and treatments with safe transfusions and hydroxyurea are often unavailable, leading to substantial morbidity and increased mortality. Collaborations between high-income countries and these low-resource settings (North-South partnerships) have been advocated, with the goal of improving clinical care. Based on directives promulgated by the World Health Organization, we have developed a strategy of developing prospective research programs that focus on training, capacity building, and local data collection. This strategy involves consideration of important guiding principles, full partnerships, proper planning, and financial issues before program launch, after which rigorous program management is required for full effect and long-term sustainability. Ultimately these collaborative research programs should help create national guidelines and lead to improved clinical care for all children and adults with SCD.     

Asthma self-management: do patient education programs always have an impact?

BACKGROUND: During the past 15 years, programs to improve self-management practices in adults with asthma have reported improvement in functional status and reduction of inappropriate use of health care services. However, these programs usually represent an ideal approach, applying multiple patient education methods. Consequently, when these programs are found to be efficacious, it is important to replicate the programs as well as to evaluate less complex methods that may be more appropriate for nonacademic health care settings. METHODS: We compared the following 3 standardized self-management treatments in a randomized, controlled trial: (1) a replication of the self-management program developed at a university medical center that was previously shown to be efficacious; (2) a modified version of this program including only the core elements; and (3) a usual-care program. Outcome measures included medication and inhaler regimen adherence, asthma symptoms, respiratory illness, functional status, and use of health care resources. RESULTS: All 3 groups improved on measures of respiratory illnesses, use of health care services, and functional status. Patients in both education groups did no better than the usual-care group. CONCLUSIONS: The results are inconsistent with the results of the first asthma self-management study at this institution and with those of efficacy studies of similar programs. Two factors, selection of the patient population and historical changes in asthma treatment, most likely contributed to the lack of impact of the self-management programs. As a result of the improved standards for usual care due to both factors, the opportunity to effect patient outcomes was substantially reduced.