Standardizing health outcomes for people with rheumatoid arthritis receiving disease modifying drug therapy: a rapid review of patient-decision aids and preference studies to inform the development of OMERACT Health Outcome Descriptors

BACKGROUND: Interest in standardizing descriptions of health outcomes is increasing. In a Health Outcome Descriptor (HOD), outcomes are systematically described covering four domains: Symptoms, Time horizon, Testing and Treatment, and Consequences. Given the lack of HODs for Rheumatoid Arthritis (RA), the aim of this study was to review published RA outcome descriptions and map them to the HOD framework. METHODS: We conducted a rapid review of patient-decision aids (PtDAs) and patient preference studies to assess how seven RA outcomes have been described in English to patients. These outcomes were selected by author consensus, from a living systematic review of RA drug therapy. After data extraction and a thematic content analysis, a narrative summary for each outcome was provided. RESULTS: We included 11 PtDAs and 27 patient preference studies. Overall, the descriptions of the same health outcome varied widely across studies. Adverse events (AEs) were described in most cases (N = 26/38). For both PtDAs and preference studies, few provided a description for patient-important outcomes like remission (N = 2/11 and N = 1/27 respectively) and pain (N = 2/11 and N = 6/27 respectively). From an HOD perspective, the descriptions focused primarily on symptoms patients may experience (94 %), and less on the other domains (18-38 %). CONCLUSION: There is wide variability in the content of the published RA outcome descriptions, as well as a lack of descriptions regarding common patient-important outcomes. As this study provides a detailed overview of existing descriptions, it may inform future development of HODs for RA