Validation of Toolkit After-Death Bereaved Family Member Interview.

The purpose of this study was to examine the reliability and validity of the Toolkit After-Death Bereaved Family Member Interview to measure quality of care at the end of life from the unique perspective of family members. The survey included proposed problem scores (a count of the opportunity to improve the quality of care) and scales. Data were collected through a retrospective telephone survey with a family member who was interviewed between 3 and 6 months after the death of the patient. The setting was an outpatient hospice service, a consortium of nursing homes, and a hospital in New England. One hundred fifty-six family members from across these settings participated. The 8 proposed domains of care, as represented by problem scores or scales, were based on a conceptual model of patient-focused, family-centered medical care. The survey design emphasized face validity in order to provide actionable information to health care providers. A correlational and factor analysis was undertaken of the 8 proposed problem scores or scales. Cronbach's alpha scores varied from 0.58 to 0.87, with two problem scores (each of which had only 3 survey items) having a low alpha of 0.58. The mean item-to-total correlations for the other problem scores varied from 0.36 to 0.69, and the mean item-to-item correlations were between 0.32 and 0.70. The proposed problem scores or scales, with the exception of closure and advance care planning, demonstrated a moderate correlation (i.e., from 0.44 to 0.52) with the overall rating of satisfaction (as measured by a five-point, "excellent" to "poor" scale). Family members of persons who died with hospice service reported fewer problems in each of the six domains of medical care, gave a higher rating of the quality of care, and reported higher self-efficacy in caring for their loved ones. These results indicate that 7 of the 8 proposed problem scores or scales demonstrated psychometric properties that warrant further testing. The domain of closure demonstrated a poor correlation with overall satisfaction and requires further work. This survey could provide information to help guide quality improvement efforts to enhance the care of the dying.

Patient-focused, family-centered end-of-life medical care: views of the guidelines and bereaved family members.

A fundamental barrier to improving the quality of medical care at the end of life is the lack of measurement tools. The Toolkit of Instruments to Measure End of Life Care (TIME) aims to fill that void by creating measurement tools that capture the patient and family perspective. To develop a conceptual model for a retrospective survey of bereaved family members that incorporates both professional and family perspectives on what constitutes good care at the end of life, a qualitative literature review of existing professional guidelines and six focus groups with bereaved family members from acute care hospitals (n = 2), nursing homes (n = 2), and hospice/VNA home health services (n = 2) was performed. The focus groups were held in Arizona, New York, and Massachusetts and included 42 bereaved family members/friends contacted 3-12 months from the time of patient's death. Domains of care that define quality end-of-life care were defined. Focus group participants defined high quality medical care as: 1) providing dying persons with desired physical comfort; 2) helping dying persons control decisions about medical care and daily routines; 3) relieving family members of the burden of being present at all times to advocate for their loved one; 4) educating family members so they felt confident to care for their loved ones at home; and 5) providing family members with emotional support both before and after the patient's death. The qualitative literature review yielded similar results, except that the professional guidelines did not mention the advocacy burden felt by families. These two sources provided the foundation for a conceptual model of patient-focused, family-centered medical care and a new tool for surveying bereaved family members. Views of bereaved family members' stories and professional guidelines help to identify key domains of quality of end-of-life care. A new survey instrument provides a way to incorporate the perspectives of bereaved family members in measuring the quality of end-of-life care.

Healthcare in a land called PeoplePower: nothing about me without me.

In a 5-day retreat at a Salzburg Seminar attended by 64 individuals from 29 countries, teams of health professionals, patient advocates, artists, reporters and social scientists adopted the guiding principle of 'nothing about me without me' and created the country of PeoplePower. Designed to shift health care from 'biomedicine' to 'infomedicine', patients and health workers throughout PeoplePower join in informed, shared decision-making and governance. Drawing, where possible, on computer-based guidance and communication technologies, patients and clinicians contribute actively to the patient record, transcripts of clinical encounters are shared, and patient education occurs primarily in the home, school and community-based organizations. Patients and clinicians jointly develop individual 'quality contracts', serving as building blocks for quality measurement and improvement systems that aggregate data, while reflecting unique attributes of individual patients and clinicians. Patients donate process and outcome data to national data banks that fuel epidemiological research and evidence-based improvement systems. In PeoplePower hospitals, constant patient and employee feedback informs quality improvement work teams of patients and health professionals. Volunteers work actively in all units, patient rooms are information centres that transform their shape and decor as needs and individual preferences dictate, and arts and humanities programmes nourish the spirit. In the community, from the earliest school days the citizenry works with health professionals to adopt responsible health behaviours. Communities join in selecting and educating health professionals and barter systems improve access to care. Finally, lay individuals partner with professionals on all local, regional and national governmental and private health agencies.

The effects of disseminating performance data to health plans: results of qualitative research with the Medicare Managed Care plans.

OBJECTIVE: To assess the information needs and responses of managed care plans to the Medicare Managed Care Consumer Assessment of Health Plans Study (MMC-CAHPS). DATA SOURCES/STUDY SETTING: One hundred sixty-five representatives of Medicare managed care plans participated in focus groups or interviews in the spring of 1998, 1999, and 2000. STUDY DESIGN: In 1998 focus groups were conducted with representatives of managed care plans to develop and test a print report of MMC-CAHPS results. After the reports were disseminated focus groups and interviews were conducted in 1999 and 2000 to identify perceptions, uses, and potential enhancements of the report. DATA COLLECTION/EXTRACTION METHODS: The study team conducted a total of 23 focus groups and 12 telephone interviews and analyzed the transcripts to identify major themes. PRINCIPAL FINDINGS: In 1998 participants identified the report content and format that best enabled them to assess their performance relative to other Medicare managed care plans. In 1999 and 2000 participants described their responses to and uses of the report. They reported comparing the MMC-CAHPS results to internal surveys and presenting the results to senior managers, market analysts, and quality-improvement teams. They also indicated that the report's usefulness would be enhanced if it were received within six months of survey completion and if additional data analysis was presented. CONCLUSIONS: Focus group results suggest that the MMC-CAHPS report enhances awareness and knowledge of the comparative performance of Medicare managed care plans. However, participants reported needing additional analysis of survey results to target quality-improvement activities on the populations with the most reported problems.

The built environment as a component of quality care: understanding and including the patient's perspective.

BACKGROUND: Although there has been little systematic assessment of how the built environment of health care facilities affects the quality of care, the built environment is a major element of structure of care--one of three facets of quality. Yet in contrast to the growing trend of using consumer perceptions of both processes and outcomes of care in QI activities, quality assessments of the structure of care do not currently rely on patient feedback. PURPOSE OF PROJECT: During the initial phase of a multiphase project, nine focus groups were conducted in 1997 to identify the salient dimensions of experience from the patient's perspective. The content of these focus groups guided the development of assessment tools in the second phase of the project, which began in February 1998. FINDINGS: Participants in three focus groups that were held in each of three settings--ambulatory care, acute care, and long term care--described in detail a variety of reactions to the built environment. Analysis revealed eight consistent themes in what patients and family member consumers look for in the built environment of health care. In all three settings, they want an environment, for example, that facilitates a connection to staff and caregivers, is conducive to a sense of well-being, and facilitates a connection to the outside world. DISCUSSION: Data derived from the focus group research has guided the development of quantitative survey and assessment tools. For each setting, patient-centered checklists and questionnaires are designed to help institutions set priorities for the improvement of facility design from the patient's perspective.

Carepartner experiences with hospital care.

OBJECTIVES: Family members and other "carepartners" often play an important role in the care and support of patients during and after hospitalization, yet little is known about how they assess their hospital experience or the factors that may influence their perceptions. METHODS: A nationwide telephone survey of 1,800 recently discharged patients and their carepartners about their hospital experience was conducted. Carepartner responses in six domains of care were summarized, and multivariable regression analysis was used to detect independent predictors of more frequent problem reports by carepartners. RESULTS: Carepartners reported problems most frequently in the domains of emotional support (23.9%), discharge planning (20.3%), and family participation (17.6%). Independent predictors of more frequent carepartner problem reports included poor subjective patient health status, emergency hospitalization, nonsurgical admission, carepartner income less than $7,500/year, younger carepartner age, noninvolvement of the patient's regular doctor, less frequent carepartner visits during the hospitalization, and less time spent with the patient after discharge. CONCLUSIONS: Better awareness of the problems carepartners experience and attention to improving quality in these areas may facilitate family involvement in patient care and enhance carepartner and patient satisfaction.

Health care quality. Incorporating consumer perspectives.

The goal of this article is to address, from the perspective of users of the health care system (consumers), the following questions: What are the most important health care quality gaps and/or challenges; what major changes should we anticipate in this area in the near future; and what should be the role of federal and state agencies, accreditation organizations, and philanthropic foundations in addressing these challenges? We discuss the needs, challenges, and potential action steps for increasing the prominence of the user's perspective in 3 areas: (1) the conceptualization and definition of quality; (2) the measurement of quality; and (3) routine quality assessment and improvement. The article concludes by making recommendations about the role that different agencies and organizations can and should play in meeting these challenges.

What information do consumers want and need?

This paper reviews information from surveys and focus group studies about how consumers define high-quality care and the types of information they want when making decisions about which health plan to join. The authors also interviewed consumer advocacy groups and persons responsible for disseminating health plan information to Medicare enrollees in various types of managed care plans to learn about the types of plan information that Medicare enrollees most often request. They describe the types of information that should be made available to consumers and the challenges involved in making this information understandable and useful.

Medical patients' assessments of their care during hospitalization: insights for internists.

OBJECTIVE: To assess, from the patient's perspective, selected aspects of the quality of inpatient hospital care in the United States. DESIGN: A cross-sectional survey, using telephone interviews of patients discharged from the medical services of a probability sample of 62 public and private, nonprofit, nonfederal acute care hospitals in the United States. The participating patients reported; discrete, clinically important elements of hospital care; preferences for involvement in care; health status; sociodemographic characteristics; and overall satisfaction with their hospitalization. PATIENTS/PARTICIPANTS: 2,839 patients drawn as a probability sample. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: For 32 of the 50 questions about potential problems encountered during hospitalization, at least 10% of the patients gave a response indicating a problem. One-third of the patients having a physician (31.8%) reported that that physician did not care for them during hospitalization. Other frequently reported problems included not receiving information about the hospital routine (45.1%), not being told whom to ask for help (33.9%), having pain that could have been relieved by more prompt attention (19.9%), and not being given adequate information and guidance about activities and care after discharge from the hospital (21.4-36.1%). Most patients preferred to be informed about important aspects of their care (94.7%), but their preferences for involvement in care varied widely. CONCLUSIONS: Information from hospitalized medical patients identified several areas of concern that should be the focus of attention and could lead to systematic restructuring of hospital-based care.

Using patient reports to improve medical care: a preliminary report from 10 hospitals.

This article describes the early activities of the Picker/Commonwealth Program for Patient-Centered Care and reports results from a study of 10 hospitals trying to develop better ways of providing patient-centered care. Reported problems were relatively infrequent, but several problems occurred as often as in an earlier national study of acute care hospitals. Academic medical centers and other teaching hospitals tended to have more problems than nonteaching hospitals, but there was great variability within hospital types. The article discusses ways patient reports can be used to improve the quality of hospital care.

The relationship between reported problems and patient summary evaluations of hospital care.

A nationwide telephone survey of 6,455 adult medical and surgical patients discharged from 62 general hospitals focused on aspects of hospitalization that affected patients' overall evaluation of their care. Eighty percent reported the care they received was excellent or very good. The strongest predictors of patients' evaluations were reported health status and the number of problems reported. Most of the associations between patient characteristics and summary evaluations were explained by differences in the number of problems reported. However, controlling for number of reported problems, the associations between evaluations and age, health status, and preferences were still statistically significant.