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Smith D, Caragian N, Kazlo E, Bernstein J, Richardson D, Casarett D. Can we make reports of end-of-life care quality more consumer-focused? results of a nationwide quality measurement program. Journal of palliative medicine. 2011 Mar 1; 14(3):301-7.
OBJECTIVES: The goal of this study was to define families' priorities for various aspects of end-of-life care, and to determine whether scores that reflect these priorities alter facilities' quality rankings. DESIGN: Nationwide telephone survey. SETTING: 62 VA medical centers, including acute and long term care. PARTICIPANTS: For each patient who died in a participating facility, one family member was invited to participate. MEASUREMENTS: A survey included 14 items describing key aspects of the patient's care in his or her last month of life, and one global rating. A weighted score was calculated based on the association between each item and the global rating. RESULTS: Interviews were completed with family members for 3,897 of 7,110 patients (55%). Items showed an approximately 5-fold range of weights, indicating a wide variation in the importance that families placed on aspects of palliative care (low: pain management, weight = 0.54, 95% CI 0.38-0.70;/P/ < 0.001; high: providers were "kind, caring, and respectful: weight = 2.46, 95% CI 2.24-2.68;/P/ < 0.001). Weights were homogeneous across patient subgroups, and there were no significant changes in facilities' quality rankings when weights were used. Both weighted and unweighted scores showed similar evidence of the impact of process measures. CONCLUSION: There appears to be wide variation in the importance that families place on several aspects of end-of-life care. However, the impact of weighting was generally even across patient subgroups and facilities. Therefore, the use of weights to account for families' priorities is not likely to alter a facility's quality score.