Incorporating the patient's perspective in outcomes research.

Abstract

Incorporation of the patients' perspective in clinical research is critical to ensure that outcomes measured reflect those, which matter most to patients. This review summarizes recent efforts to include the patients' perspective in the development of outcome measures and the importance of encouraging patient participation in decision-making and self-management. Since the inclusion of fatigue as a patient-endorsed core outcome measure in rheumatoid arthritis (RA) trials, OMERACT has been instrumental in advocating for patient involvement in the development of core domains and instruments; current endeavors include cultivating an understanding of remission through the eyes of patients and gaining a sense of how to measure features of pain and 'stiffness' deemed as important to patients. The concept of remission was further explored in RA patients, highlighting a common goal of returning to normality; additionally, various tools have been developed to assess for unmet needs in rheumatology patients. Advances have also been made in the development and revision of patient-centered core measures in rheumatologic diagnoses outside of RA. Incorporating the patients' perspective is now considered an essential feature in outcomes research. Future research should focus on how best to involve patients in specific research activities.