Karen E. Steinhauser

Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research

Background: In order to improve the state of science in palliative care, we must increase our ability to document the real-time experience of patients and families as they traverse the end of life. Yet, frequently, prospective measurement is impeded by difficulty with patient identification, recruitment, enrollment, and retention. The palliative care literature is replete with descriptions of studies unable to meet enrollment goals, and that as a result, do not have adequate power to test hypotheses or draw conclusions. Objectives: To review the literature describing difficulties associated with ascertainment, enrollment, and attrition. To outline the successful recruitment methods of a new longitudinal study of patients and their caregivers. Design: A two-year longitudinal study of 240 patients with Stage IV cancer (breast, prostate, colorectal, lung), advanced congestive heart failure (CHF) LVEFB < 40 or advanced chronic obstructive pulmonary disease (COPD) pCO2 > 46, and their caregivers, interviewed monthly for up to two years. Patients were identified using clinical and administrative databases from one geographic region. Results: Representative and successful ascertainment was associated with use of clinical criteria and medical record review versus physician or other provider prognostication, use of recruitment letters from personal physician, recruitment letter content, brochure content, small monetary incentives, refined phone scripts, use of matched ethnicity interviewers, in-home and phone interview strategies, measure selection, patient and caregiver rapport, and on-going staff support (including grief and bereavement). Conclusions: Recruitment to prospective longitudinal studies at the end of life is difficult, but possible. The lessons learned from this study are applicable to future investigators conducting prospective research.

Initial assessment of a new instrument to measure quality of life at the end of life.

PURPOSE We conducted this study to pilot a new multidimensional instrument to assess the quality of life at the end of life. METHODS Items were derived from focus groups and a national survey identifying attributes of the quality of dying. Fifty-four items measured on a five-point Likert scale covered six domains. We administered the instrument to equal numbers of Veterans Administration (VA) and university medical center outpatients with advanced serious illness. We assessed psychometric properties using factor analysis. RESULTS Two hundred patients completed the instrument (response rate, 85%). Diagnoses included cancer (64%), congenital heart failure (CHF) (19.5%), end-stage renal disease (ESRD) (10%) and chronic obstructive pulmonary disease (COPD) (6.5%). Seventy-four percent were male, 64% were caucasian, and 34% African American. Item reduction and factor analysis yielded a final instrument with 24 items in 5 distinct domains (overall Cronbach a = 0.83). The first factor (6 items; a = 0.84) measured a sense of completion, particularly through contributions to others. The second factor (7 items; alpha = 0.77) measured relations with the health care system. The third factor (6 items; alpha = 0.77) measured preparation. The fourth factor (4 items; alpha = 0.77) measured symptom severity, and the final factor (2 items; alpha = 0.60) measured affective social support. CONCLUSIONS We have developed a new instrument to measure the quality of life at the end of life that assesses empirically derived domains that are of demonstrated importance to dying patients, is acceptable to a seriously ill population, and exhibits excellent psychometric properties. Some items related to completion and preparation represent particularly new contributions to quality-of-life measurement.

Congestive heart failure patients’ perceptions of quality of life: the integration of physical and psychosocial factors

Congestive heart failure (CHF) lowers survival and worsens the quality of life (QOL) of over four million older Americans. Both clinicians and standardized instruments used to assess the QOL of patients with CHF focus primarily on physical symptoms rather than capturing the full range of psychosocial concerns. The purpose of this study was to gather descriptions of the components of QOL as understood by patients living with CHF. Focus groups were conducted with patients with known CHF, New York Heart Association (NYHA) class I–IV, and left ventricular fraction of <40%. Focus groups were audiotaped, transcribed, and reviewed for common and recurrent themes using the methods of constant comparisons. We conducted three focus groups (n = 15) stratified by NYHA stage with male patients ranging in age from 47–82 years of age. Five patients were classified with NYHA stage III/IV and ten with NYHA stage I/II. Thirty attributes of QOL were identified which fell into five broad domains: symptoms, role loss, affective response, coping, and social support. Expectedly, patients reported the importance of physical symptoms; however, participants also identified concern for family, the uncertainty of prognosis, and cognitive function as dimensions of QOL. Changes in patients’ lives attributed to CHF were not always considered deficiencies; rather, methods of coping with CHF were identified as important attributes representing possible opportunities for personal growth. Clinicians must understand the full range of concerns affecting the QOL of their older patients with CHF. The findings suggest that psychosocial aspects and patient uncertainty about their prognosis are important components of QOL among CHF patients.

Discussions of the Kidney Disease Trajectory by Elderly Patients and Nephrologists: A Qualitative Study

BACKGROUND Elderly patients with advanced kidney disease experience considerable disability, morbidity, and mortality. Little is known about the impact of physician-patient interactions on patient preparation for the illness trajectory. We sought to describe how nephrologists and older patients discuss and understand the prognosis and course of kidney disease leading to renal replacement therapy. METHODS We conducted focus groups and interviews with 11 nephrologists and 29 patients older than 65 years with advanced chronic kidney disease or receiving hemodialysis. Interviews were audiorecorded and transcribed. We used qualitative analytic methods to identify common and recurrent themes related to the primary research question. RESULTS We identified 6 themes that describe how the kidney disease trajectory is discussed and understood: (1) patients are shocked by their diagnosis, (2) patients are uncertain how their disease will progress, (3) patients lack preparation for living with dialysis, (4) nephrologists struggle to explain illness complexity, (5) nephrologists manage a disease over which they have little control, and (6) nephrologists tend to avoid discussions of the future. Patients and nephrologists acknowledged that prognosis discussions are rare. Patients tended to cope with thoughts of the future through avoidance by focusing on their present clinical status. Nephrologists reported uncertainty and concern for evoking negative reactions as barriers to these conversations. CONCLUSIONS Patients and nephrologists face challenges in understanding and preparing for the kidney disease trajectory. Communication interventions that acknowledge the role of patient emotion and address uncertainty may improve how nephrologists discuss disease trajectory with patients and thereby enhance their understanding and preparation for the future.

Measuring quality of life at the end of life: validation of the QUAL-E.

OBJECTIVES To validate the QUAL-E, a new measure of quality of life at the end of life. METHODS We conducted a cross-sectional study to assess the instruments psychometric properties, including the QUAL-Es associations with existing measures, evaluation of robustness across diverse sample groups, and stability over time. The study was conducted at the VA and Duke University Medical Centers, Durham, North Carolina, in 248 patients with stage IV cancer, congestive heart failure with ejection fraction < or = 20%, chronic obstructive pulmonary disease with FEV1 < or = 1.0 1, or dialysis-dependent end stage renal disease. The main outcome measures included QUAL-E and five comparison measures: FACIT quality of life measure, Missoula-VITAS Quality of Life Index, FACIT-SP spirituality measures, Participatory Decision Making Scale (MOS), and Duke EPESE social support scales. RESULTS QUAL-E analyses confirmed a four-domain structure (25 items): life completion (alpha = 0.80), symptoms impact (alpha = 0.87), relationship with health care provider (alpha = 0.71), and preparation for end of life (alpha = 0.68). Convergent and discriminant validity were demonstrated with multiple comparison measures. Test-retest reliability assessment showed stable scores over a 1-week period. SIGNIFICANCE OF RESULTS The QUAL-E, a brief measure of quality of life at the end of life, demonstrates acceptable validity and reliability, is easy to administer, performs consistently across diverse demographic and disease groups, and is acceptable to seriously ill patients. It is offered as a new instrument to assist in the evaluation of the quality and effectiveness of interventions targeting improved care at the end of life.

Measuring the quality of dying in long-term care.

OBJECTIVES: To describe two versions of a new measure, The Quality of Dying in Long‐Term Care, for postdeath administration to surrogate respondents (staff and family caregivers) of all decedents (QOD‐LTC) and of cognitively intact decedents (QOD‐LTC‐C) who die in nursing homes (NHs) and residential care or assisted living (RC/AL) facilities.

Burden and Well-Being Among a Diverse Sample of Cancer, Congestive Heart Failure, and Chronic Obstructive Pulmonary Disease Caregivers

CONTEXT Three important causes of death in the U.S. (cancer, congestive heart failure, and chronic obstructive pulmonary disease) are preceded by long periods of declining health; often, family members provide most care for individuals who are living with serious illnesses and are at risk for impaired well-being. OBJECTIVES To expand understanding of caregiver burden and psychosocial-spiritual outcomes among understudied groups of caregivers-cancer, congestive heart failure, and chronic obstructive pulmonary disease caregivers-by including differences by disease in a diverse population. METHODS The present study included 139 caregiver/patient dyads. Independent variables included patient diagnosis and function; and caregiver demographics, and social and coping resources. Cross-sectional analyses examined distributions of these independent variables between diagnoses, and logistic regression examined correlates of caregiver burden, anxiety, depressive symptoms, and spiritual well-being. RESULTS There were significant differences in patient functioning and caregiver demographics and socioeconomic status between diagnosis groups but few differences in caregiver burden or psychosocial-spiritual outcomes by diagnosis. The most robust social resources indicator of caregiver burden was desire for more help from friends and family. Anxious preoccupation coping style was robustly associated with caregiver psychosocial-spiritual outcomes. CONCLUSION Caregiver resources, not patient diagnosis or illness severity, are the primary correlates associated with caregiver burden. Additionally, caregiver burden is not disease specific to those examined here, but it is rather a relatively universal experience that may be buffered by social resources and successful coping styles.

Comparing Three Life-Limiting Diseases: Does Diagnosis Matter or Is Sick, Sick?

CONTEXT At advanced stages, cancer, congestive heart failure (CHF), and chronic obstructive pulmonary disease (COPD) produce high rates of hospitalization, disability, and annual mortality. Despite similar prognoses, patients with cancer often are treated differently than those with other illnesses, the former being seen as terminal vs. chronic. OBJECTIVES The purpose of this study was to compare the functional capacity, emotional well-being, and quality of life of patients in three disease groups to assess whether diagnosis distinguishes differences in patient experience, and compare patients with cancer and noncancer diagnoses. METHODS Baseline data from a cohort study of 210 patients who had an estimated 50% two-year mortality were analyzed. The patients had Stage IV breast, prostate, or colon cancer; Stage IIIb or IV lung cancer; New York Heart Association Stage III or IV CHF with a left ventricular ejection fraction of <40%; or COPD with hypercapnea (pC02>46) and at least one hospitalization or Emergency Department visit during the past year. Measures included the Rosow-Breslau Activities of Daily Living/Instrumental Activities of Daily Living tool, Profile of Mood States anxiety subscale, brief Centers for Epidemiologic Studies Depression Scale, and the Functional Assessment of Cancer Therapy-General quality-of-life instrument. Analyses included descriptive statistics, analysis of variance, and adjusted linear regression models. RESULTS A majority of illness outcomes did not differ by diagnostic category. Functional status was associated with diagnosis, with CHF and COPD patients faring worse than those with cancer. Overall, illness experience was most significantly related to disease severity, demographics, and emotional and social well-being. CONCLUSION Comparing patients with advanced cancer, CHF, and COPD, illness experience was more similar than different. Patients living with life-limiting illnesses other than cancer may benefit from whole-person services often extended to cancer patients.

Seriously ill patients' discussions of preparation and life completion: an intervention to assist with transition at the end of life.

OBJECTIVE Patients approaching the end of life not only face challenges to physical well-being but also threats to emotional and spiritual integrity. Yet, identifying appropriate, effective, and brief interventions to address those concerns has proven elusive. We developed an intervention based on life review and emotional disclosure literatures and conducted a pilot study to determine feasibility and acceptability. This article presents qualitative intervention responses. METHOD We conducted a three-armed randomized control trial to evaluate the effects of preparation and life completion discussion on health outcomes in patients with advanced serious illness. Hospice-eligible subjects were randomly assigned to one of three groups: (1) intervention (life completion discussion intervention), (2) attention control (relaxation meditation), and control (no intervention). Subjects in the intervention arm met with a facilitator three times. Session 1 focused on life story, Session 2 on forgiveness, and Session 3, on heritage and legacy. RESULTS Eighteen subjects participated in the pilot intervention interviews. Subjects from a range of socioeconomic backgrounds completed the intervention with equal facility. Results from Session 1 demonstrate narrative responses participants gave as they reconnected with previous life roles, values, and accomplishments. The second session illustrated reflections of choices one might have made differently and exploration of forgiveness offered and sought. Content from the first and second sessions laid the foundation for discussing Session 3s lessons learned and heritage and legacy. Responses are summarized to assist clinicians in anticipating life review content that may improve overall quality of life at the end of life. SIGNIFICANCE OF RESULTS Discussions of life completion may improve important health outcomes for patients at the end of life. This intervention may provide a brief, standardized, and transportable means for improving the quality of life of patients with advanced serious illness.

Race, aging, and functional health

This article presents evidence of a Black/White crossover in functional health. Its existence supports the hypothesis, based on selective survival, that older members of socially disadvantaged populations are relatively more physiologically robust and thus exhibit relatively favorable functional capacities. Longitudinal data on 5,150 persons 70 years of age and older shows that within young-old age groups, Blacks are more likely to experience functional status decline over a 6-year period than Whites, whereas within oldest-old age groups, Blacks are less likely to experience decline. The authors also provide confirmation or modification of several hypotheses implicit in the literature on aging, race, and functional health. They find support for the hypothesis that racial differences in age-related changes in mean levels of functional health (i.e., self-care capacity and physical functioning) are age dependent, but do not find support for the hypothesis that social class fully accounts for racial differences in functional status change.