Address correspondence to Richard A. Mularski, M.D., M.S.H.S., F.C.C.P., Clinical Investigator, Clinical Assistant Professor of Medicine, Center for Health Research, Kaiser Permanente Northwest, Oregon Health & Science University, 3800 N. Interstate, WIN 1060, Portland, OR 97227. Sydney M. Dy, M.D., M.Sc., is with the Johns Hopkins Bloomberg School of Public Health and School of Medicine, Baltimore, MD. Lisa R. Shugarman, Ph.D., Paul G. Shekelle, M.D., Ph.D., Director, Lara K. Hilton, B.A., Margaret Maglione, Ph.D., M.P.P., Shannon L. Rhodes, M.S., M.F.A., Cony Rolon, B.A., and Karl A. Lorenz, M.D., M.S.H.S., are with the Southern California Evidence-Based Practice Center, RAND Health, Santa Monica, CA. Anne M. Wilkinson, Ph.D., and Joanne Lynn, M.D., M.A., M.S., are with the RAND Corporation—Arlington, Arlington, VA. Sally C. Morton, Ph.D., is with RTI International, Research Triangle Park, NC. Virginia C. Sun, B.S., M.S.N., R.N., is with the City of Hope National Medical Center, Duarte, CA. Ronda G. Hughes, Ph.D., M.H.S., R.N., is with the Center for Primary Care, Prevention, & Clinical Partnerships, Agency for Healthcare Research & Quality, Rockville, MD.
A Systematic Review of Measures of End-of-Life Care and Its Outcomes
Article first published online: 11 APR 2007
Health Services Research
Volume 42, Issue 5, pages 1848–1870, October 2007
How to Cite
Mularski, R. A., Dy, S. M., Shugarman, L. R., Wilkinson, A. M., Lynn, J., Shekelle, P. G., Morton, S. C., Sun, V. C., Hughes, R. G., Hilton, L. K., Maglione, M., Rhodes, S. L., Rolon, C. and Lorenz, K. A. (2007), A Systematic Review of Measures of End-of-Life Care and Its Outcomes. Health Services Research, 42: 1848–1870. doi: 10.1111/j.1475-6773.2007.00721.x
- Issue published online: 11 APR 2007
- Article first published online: 11 APR 2007
- Quality of health care;
- outcome and process assessment (health care);
- end-of-life care;
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.