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7 Applications of Quality-of- Life Measures and Areas for Cooperative Research Jennifer Falotico-Taylor and Frederick MosteDer Severe developments contribute to the emergence of Me field of qual- ity of life: me increased prevalence of chronic disease, We proliferation of health technologies, cost-contairunent concerns, and the cunent emphasis on social factors in heals assessments. Numerous quality-of-life instruments can evaluate heath technologies in response to these concems. Genenc measures contain a minimum set of health concepts, usually measuring physical, psychological, social, and role functioning and general well-being. Specific measures target treat- ments, diseases, or populations. Each measure has its own research advantages. For example, standard- ized, generic measures facilitate comparisons between various sick and well groups, younger and older age groups, and groups win different diseases; disease-specific measures are more sensitive to specific clinical interventions. Many researchers supplement accepted generic measures win specific measures that seem appropriate for a particular group, dis- ease, or treatment Researchers emphasize Me importance of focusing on these existing generic and specific measures and establishing more firmly their reliabil- i~ and validity, rather Man increasing the variety of measures. Clinicians Acknowledgment: The issues and ideas presented in this chapter are drawn in large part from the summary statements of Frederick bIosteller, John E. Ware, Jr., and Sol Levine (~osteller et al 1989) presented at the Henry J. Kaiser Family Foundation Conference on Advances in Health Status As- sessment, Menlo Park, ~~tifoniia, July 13-15, 1988. ~6
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APPLICATIONS AND AREAS FOR COOPERATIVE RESEARCH 117 need these data for special populations such as handicapped groups, ethnic groups, Me elderly, and well populations. By being able to interpret these measures in a broader variety of populations, researchers can refine Weir work and strengthen Weir con- elusions. The ~ntemational community is already active ~ this area. Dr. Neil Aaronson of the Netherlands Cancer Institute has been ~nves~gadng He applications of quality~f-life measurement in oncology clinical Vials. He has also been working with the World Heath Organazadon (WHO) CoBaborat~ng Center and is establishing a databank on He measurement of quality of life in coccal teals. Researchers agree Hat for He quality-of-life field to continue to de- velop, it must be applied to daily clinics practice. Clinicians, In parUcu- lar physicians, win carry most of the burden of using these measures. Clinicians are the key to He future of quality-of-life measurement in assessing health care because Hey form the frord line. Researchers must cianfy the relationship between clinical and general heath measures as a way for clinicians to appraise and appreciate what quality-of-life scores or changes In scores mean In Heir clinical practice. By translating these quality-of-life scores into concrete gains or losses, He clinician can con- vert a score on a quality-of-life measure or a change in status to an indication for the next step in treatment or ~ greater insight about the health of a particular patient. Short, easy to administer, and widely adaptable quality-of-life meas- ures have He greatest chance of being used in a variety of clinical and practice rouhnes. Researchers caution that although short-fonn measures may be more practical, they may not achieve the level of reliability and validity of lengthier forms. To convince others that undertaking the expense and time necessary to gamer data on the various treatments and procedures is worthwhile, researchers need to demonstrate Hat use of these measures does improve He padents' outcomes. Phamlaceubcal companies have alIeady funded some quality-of-life research as part of their product development; in the long term, quality-of- life concerns may become part of He marketing strategy for these fiens. The interest these funding sources create in quality~f-life measures can increase Heir use by providing a reimbursement system that would en- courage cI~rucians to administer these measures. Several researchers have emphasized the importance of good methodo- logical work. Toward this end, many investigators principally interested in measuring health outcomes have joined forces with researchers study- ing methodological issues. These cooperative, "piggybacked'9 studies
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118 J. FALOTICO-TAYl~OR AND F. MOSTF, FOR capitalize on existing research opportunities by combining outcome and methodological research. Methodology investigators can provide techni- cal assistance to those measuring heady outcomes and may share costs if me additional methodological work is expensive. Sponsors of bow types of research win receive more information and thus a greater return on Weir research ~nve;stment. Ultimately, quality-of-life research offers padents a greater voice and an opportunity to make more informed choices about their heath care. For example, John Wennberg and his colleagues gave preoperative prostat- ectomy patients We chance to hear from others who had undergone this operation and who related, on film, their pre- md postoperative experi- ences. This approach gives the preoperative padent a better understand- ing of the consequences of this decision In quality-of-life terms. Cal clans adso benefit because Weir patients have a more realistic view of what a specific trea~anent win and win not remedy. Me joird effort of clin~- cians, health care researchers, a~nin~strators, and funding sources can strengthen technology assessments to improve the perceived as wed as Me physiological impact of interventions on patients. REFERENCE Mosteller, F., Ware, I.E., Ir., and Levine, S. Finale Panel: Comments on Me conference on advances in health status assessment. Medical Care 27:S282-S294, March Supplement, 1989.