Patient perspective in outcome assessments--perceptions or something more?

Abstract

Health status measures constitute an essential part of outcome assessments in patients with rheumatic diseases. Currently used health status measures typically assess patient perceptions within various dimensions of health. The issue of widening patient perspective in outcome assessments was raised at OMERACT 2000 and further activities were initiated at the subsequent American College of Rheumatology meetings. Measuring patient perceptions of health is considered the standard approach in clinical practice, controlled clinical trials, and longitudinal observation studies, as well as in other types of epidemiological research. However, the traditionally used instruments also have limitations based on the relevance of the questionnaire items, sensitivity to change in longitudinal observational studies, and intraindividual variations over time. Patient priorities or preferences for improvement in health may be an alternative for the assessment of important patient outcomes. Data support that patient priorities for improvement in health are associated with their perception, but that overlap is incomplete and that complimentary information may be achieved. Expectations about future health and satisfaction with health may also represent alternative approaches. Thus, an open research agenda is required for the future, including different approaches regarding both endpoints and methodological issues.