METHODOLOGICAL ISSUES IN MEASURING PATIENT-REPORTED OUTCOMES - THE AGENDA OF THE WORK GROUP ON OUTCOMES ASSESSMENT

The primary goal of the Inter-PORT work group on Outcomes Assessment i s to foster methodological knowledge about the implications of various measure and design decisions for studies of the outcomes of treatment . A number of key methodological issues currently are unresolved and a re in need of further study. These include: 1) the best questions to a sk to assess how patients are affected by their treatments; 2) the com parative advantages of various study designs, including prospective co horts, retrospective studies, and randomized clinical trials; 3) the w ay data collection decisions, such as mode of data collection and use of proxy respondents, affect study results; and 4) the best way to ass ess the significance of observed effects from patient, provider, and p ublic policy perspectives. Studies conducted by the Patients Outcomes Research Teams (PORTs) are using diverse designs, measures, and data c ollection procedures. They provide a unique opportunity to further kno wledge about methods of obtaining information about treatment outcomes . Through meetings, conferences, and publications, the Inter-PORT work group on Outcomes Assessment is trying to stimulate analyses aimed at methodological issues summarized in this paper and to ensure that new knowledge about methods is disseminated to a wide audience.