Assessing Health-Related Quality of Life in Disadvantaged and Very Ill Populations

Published In: Quality of Life and Pharmacoeconomics In Clinical Trials, Second Edition / Spilker B. Ed. (Philadelphia, PA : Lippincott-Raven Publishers, 1995) p. 595-604

Posted on RAND.org on January 01, 1996

by Margot K. Ettl, Ron D. Hays, William Cunningham, Martin F. Shapiro, C. Keith Beck

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The authors conducted an observational study on the effectiveness of clinical evaluation in the real-world settings of public clinics that treat HIV patients. Between 1991 and 1994, they conducted a longitudinal survey related to health-related quality of life (HRQL) among people with HIV infection. Clinically ill, poor, and minority patients are heavily represented. Because of the dearth of relevant literature, this study illustrates the methodologic problems presented by this population and provides the following recommendations based on the authors' experience: (a) the research team must be carefully selected, (b) a questionnaire must be tailored to the target population, and the use of focus groups helps with this goal, (c) building interpersonal relationships with patients and hospital staff can overcome obstacles in study participation, (d) one can use the same measures together to determine differences between disadvantaged and non-disadvantaged populations, (e) the enrollment process needs to be tracked carefully to maximize study participation, (f) funds need to be reallocated because data collection costs are almost always higher than anticipated, (g) one needs to be tireless in research efforts, including attending all clinics, enrollment, and follow-up, and (h) the research staff must take care of each other so that their morale does not decline and result in the decline of participation rates.

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