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A systematic review of measures of end-of-life care and its outcomes.

ABSTRACT: To identify psychometrically sound measures of outcomes in end-of-life care and to characterize their use in intervention studies.English language articles from 1990 to November 2005 describing measures with published psychometric data and intervention studies of end-of-life care.Systematic review of end-of-life care literature.Two reviewers organized identified measures into 10 major domains. Eight reviewers extracted and characterized measures from intervention studies.Of 24,423 citations, we extracted 200 articles that described 261 measures, accepting 99 measures. In addition to 35 measures recommended in a prior systematic review, we identified an additional 64 measures of the end-of-life experience. The most robust measures were in the areas of symptoms, quality of life, and satisfaction; significant gaps existed in continuity of care, advance care planning, spirituality, and caregiver well-being. We also reviewed 84 intervention studies in which 135 patient-centered outcomes were assessed by 97 separate measures. Of these, 80 were used only once and only eight measures were used in more than two studies.In general, most measures have not undergone rigorous development and testing. Measure development in end-of-life care should focus on areas with identified gaps, and testing should be done to facilitate comparability across the care settings, populations, and clinical conditions. Intervention research should use robust measures that adhere to these standards.

SUBMITTER: Mularski RA

PROVIDER: S-EPMC2254566 | biostudies-literature | 2007 Oct

REPOSITORIES: biostudies-literature

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A systematic review of measures of end-of-life care and its outcomes.

Mularski Richard A RA Dy Sydney M SM Shugarman Lisa R LR Wilkinson Anne M AM Lynn Joanne J Shekelle Paul G PG Morton Sally C SC Sun Virginia C VC Hughes Ronda G RG Hilton Lara K LK Maglione Margaret M Rhodes Shannon L SL Rolon Cony C Lorenz Karl A KA

Health services research 20071001 5

<h4>Objective</h4>To identify psychometrically sound measures of outcomes in end-of-life care and to characterize their use in intervention studies.<h4>Data sources</h4>English language articles from 1990 to November 2005 describing measures with published psychometric data and intervention studies of end-of-life care.<h4>Study design</h4>Systematic review of end-of-life care literature.<h4>Extraction methods</h4>Two reviewers organized identified measures into 10 major domains. Eight reviewers ...[more]

PMID: 17850523

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Project description:ImportanceEvidence supports palliative care effectiveness. Given workforce constraints and the costs of new services, payers and providers need help to prioritize their investments. They need to know which patients to target, which personnel to hire, and which services best improve outcomes.ObjectiveTo inform how payers and providers should identify patients with "advanced illness" and the specific interventions they should implement, we reviewed the evidence to identify (1) individuals appropriate for palliative care and (2) elements of health service interventions (personnel involved, use of multidisciplinary teams, and settings of care) effective in achieving better outcomes for patients, caregivers, and the healthcare system.Evidence reviewSystematic searches of MEDLINE, EMBASE, PsycINFO, Web of Science, and Cochrane Database of Systematic Reviews databases (1/1/2001-1/8/2015).ResultsRandomized controlled trials (124) met inclusion criteria. The majority of studies in cancer (49%, 38 of 77 studies) demonstrated statistically significant patient or caregiver outcomes (e.g., p?<?0.05), as did those in congestive heart failure (CHF) (62%, 13 of 21), chronic obstructive pulmonary disease (COPD; 58%, 11 of 19), and dementia (60%, 15 of 25). Most prognostic criteria used clinicians' judgment (73%, 22 of 30). Most interventions included a nurse (70%, 69 of 98), and many were nurse-only (39%, 27 of 69). Social workers were well represented, and home-based approaches were common (56%, 70 of 124). Home interventions with visits were more effective than those without (64%, 28 of 44; vs. 46%, 12 of 26). Interventions improved communication and care planning (70%, 12 of 18), psychosocial health (36%, 12 of 33, for depressive symptoms; 41%, 9 of 22, for anxiety), and patient (40%, 8 of 20) and caregiver experiences (63%, 5 of 8). Many interventions reduced hospital use (65%, 11 of 17), but most other economic outcomes, including costs, were poorly characterized. Palliative care teams did not reliably lower healthcare costs (20%, 2 of 10).ConclusionsPalliative care improves cancer, CHF, COPD, and dementia outcomes. Effective models include nurses, social workers, and home-based components, and a focus on communication, psychosocial support, and the patient or caregiver experience. High-quality research on intervention costs and cost outcomes in palliative care is limited.

Project description:ObjectiveHealth disparities are pervasive in nursing homes (NHs), but disparities in NH end-of-life (EOL) care (ie, hospital transfers, place of death, hospice use, palliative care, advance care planning) have not been comprehensively synthesized. We aim to identify differences in NH EOL care for racial/ethnic minority residents.DesignA systematic review guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and registered in PROSPERO (CRD42020181792).Setting and participantsOlder NH residents who were terminally ill or approaching the EOL, including racial/ethnic minority NH residents.MethodsThree electronic databases were searched from 2010 to May 2020. Quality was assessed using the Newcastle-Ottawa Scale.ResultsEighteen articles were included, most (n = 16) were good quality and most (n = 15) used data through 2010. Studies varied in definitions and grouping of racial/ethnic minority residents. Four outcomes were identified: advance care planning (n = 10), hospice (n = 8), EOL hospitalizations (n = 6), and pain management (n = 1). Differences in EOL care were most apparent among NHs with higher proportions of Black residents. Racial/ethnic minority residents were less likely to complete advance directives. Although hospice use was mixed, Black residents were consistently less likely to use hospice before death. Hispanic and Black residents were more likely to experience an EOL hospitalization compared with non-Hispanic White residents. Racial/ethnic minority residents experienced worse pain and symptom management at the EOL; however, no articles studied specifics of palliative care (eg, spiritual care).Conclusions and implicationsThis review identified NH health disparities in advance care planning, EOL hospitalizations, and pain management for racial/ethnic minority residents. Research is needed that uses recent data, reflective of current NH demographic trends. To help reduce EOL disparities, language services and cultural competency training for staff should be available in NHs with higher proportions of racial/ethnic minorities.

Project description:BackgroundEnd of life (EoL) care in sub-Saharan Africa still lacks the sound evidence-base needed for the development of effective, appropriate service provision. It is essential to make evidence from all types of research available alongside clinical and health service data, to ensure that EoL care is ethical and culturally appropriate. This article aims to synthesize qualitative research on EoL care in sub-Saharan Africa to inform policy, practice and further research. It seeks to identify areas of existing research; describe findings specifically relevant to the African context; and, identify areas lacking evidence.MethodsRelevant literature was identified through eight electronic databases: AMED, British Nursing Index & Archive, CINAHL, EMBASE, IBSS, MEDLINE, PsycINFO, and the Social Sciences Citation Index; and hand searches. Inclusion criteria were: published qualitative or mixed-method studies in sub-Saharan Africa, about EoL care. Study quality was assessed using a standard grading scale. Relevant data including findings and practice recommendations were extracted and compared in tabular format.ResultsOf the 407 articles initially identified, 51 were included in the qualitative synthesis. Nineteen came from South Africa and the majority (38) focused on HIV/AIDS. Nine dealt with multiple or unspecified conditions and four were about cancer. Study respondents included health professionals, informal carers, patients, community members and bereaved relatives. Informal carers were typically women, the elderly and children, providing total care in the home, and lacking support from professionals or the extended family. Twenty studies focused on home-based care, describing how programmes function in practice and what is needed to make them effective. Patients and carers were reported to prefer institutional care but this needs to be understood in context. Studies focusing on culture discussed good and bad death, culture-specific approaches to symptoms and illness, and the bereavement process.ConclusionsThe data support or complement the findings from quantitative research. The review prompts a reconsideration of the assumption that in Africa the extended family care for the sick, and that people prefer home-based care. The review identifies areas relevant for a research agenda on socio-cultural issues at the EoL in sub-Saharan Africa.

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A systematic review of measures of end-of-life care and its outcomes.

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A systematic review of measures of end-of-life care and its outcomes.

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