A Systematic Review of Measures of End-of-Life Care and Its Outcomes

Published in: Health Services Research, v. 42, no. 5, Oct. 2007, p. 1848-1870

Posted on RAND.org on December 31, 2006

by Richard A. Mularski, Sydney Dy, Lisa R. Shugarman, Anne Wilkinson, Joanne Lynn, Paul G. Shekelle, Sally C. Morton, Virginia C. Sun, Ronda G. Hughes, Lara Hilton, Margaret Maglione, Shannon Rhodes, Cony Rolon, Karl Lorenz

Read More

Access further information on this document at www.blackwell-synergy.com

This article was published outside of RAND. The full text of the article can be found at the link above.

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, the authors extracted 200 articles that described 261 measures, accepting 99 measures. In addition to 35 measures recommended in a prior systematic review, the authors 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. The authors 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.

Research conducted by

This report is part of the RAND Corporation external publication series. Many RAND studies are published in peer-reviewed scholarly journals, as chapters in commercial books, or as documents published by other organizations.

The RAND Corporation is a nonprofit institution that helps improve policy and decisionmaking through research and analysis. RAND's publications do not necessarily reflect the opinions of its research clients and sponsors.