A Systematic Review of Measures of End-of-Life Care and Its Outcomes
Outcome and Process Assessment (Health Care); Quality of Health Care; dying; Essential Data Set; end-of-life care; measures
Objective. To identify psychometrically sound measures of outcomes in end-of-life care and to characterize their use in intervention studies.Data Sources. English language articles from 1990 to November 2005 describing measures with published psychometric data and intervention studies of end-of-life care.Study Design. Systematic review of end-of-life care literature.Extraction Methods. Two reviewers organized identified measures into 10 major domains. Eight reviewers extracted and characterized measures from intervention studies.Principal Findings. 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.Conclusions. 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.
2007
Mularski RA; Dy SM; Shugarman LR; Wilkinson A; Lynn J; Shekelle PG; Morton SC; Sun VC; Hughes RG; Hilton LK; Maglione M; Rhodes SL; Rolon C; Lorenz KA
Health Services Research
2007
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/j.1475-6773.2007.00721.x" target="_blank" rel="noreferrer">10.1111/j.1475-6773.2007.00721.x</a>
Evidence for improving palliative care at the end of life: a systematic review
Humans; Caregivers/psychology; referral and consultation; Palliative Care/standards; social support; RDF Project; Continuity of Patient Care/standards; Pain/therapy; Patient Care Team/standards; Advance Care Planning/standards; Depression/therapy; Dyspnea/therapy
BACKGROUND: Many persons and their families are burdened by serious chronic illness in late life. How to best support quality of life is an important consideration for care. PURPOSE: To assess evidence about interventions to improve palliative and end-of-life care. DATA SOURCES: English-language citations (January 1990 to November 2005) from MEDLINE, the Database of Abstracts of Reviews of Effects, the National Consensus Project for Quality Palliative Care bibliography, and November 2005 to January 2007 updates from expert reviews and literature surveillance. STUDY SELECTION: Systematic reviews that addressed "end of life," including terminal illness (for example, advanced cancer) and chronic, eventually fatal illness with ambiguous prognosis (for example, advanced dementia), and intervention studies (randomized and nonrandomized designs) that addressed pain, dyspnea, depression, advance care planning, continuity, and caregiving. DATA EXTRACTION: Single reviewers screened 24,423 titles to find 6381 relevant abstracts and reviewed 1274 articles in detail to identify 33 high-quality systematic reviews and 89 relevant intervention studies. They synthesized the evidence by using the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) classification. DATA SYNTHESIS: Strong evidence supports treating cancer pain with opioids, nonsteroidals, radionuclides, and radiotherapy; dyspnea from chronic lung disease with short-term opioids; and cancer-associated depression with psychotherapy, tricyclics, and selective serotonin reuptake inhibitors. Strong evidence supports multi component interventions to improve continuity in heart failure. Moderate evidence supports advance care planning led by skilled facilitators who engage key decision makers and interventions to alleviate caregiver burden. Weak evidence addresses cancer-related dyspnea management, and no evidence addresses noncancer pain, symptomatic dyspnea management in advanced heart failure, or short-acting antidepressants in terminal illness. No direct evidence addresses improving continuity for patients with dementia. Evidence was weak for improving caregiver burdens in cancer and was absent for heart failure. LIMITATIONS: Variable literature indexing for advanced chronic illness and end of life limited the comprehensiveness of searches, and heterogeneity was too great to do meta-analysis. CONCLUSION: Strong to moderate evidence supports interventions to improve important aspects of end-of-life care. Future research should quantify these effects and address the generalizability of insights across the conditions and settings of the last part of life. Many critical issues lack high-quality evidence.
2008
Lorenz KA; Lynn J; Dy SM; Shugarman LR; Wilkinson A; Mularski RA; Morton SC; Hughes RG; Hilton LK; Maglione M; Rhodes SL; Rolon C; Sun VC; Shekelle PG
Annals Of Internal Medicine
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.7326/0003-4819-148-2-200801150-00010" target="_blank" rel="noreferrer">10.7326/0003-4819-148-2-200801150-00010</a>