Unraveling Patient‐Preferred Health and Treatment Outcomes in Early Rheumatoid Arthritis: A Longitudinal Qualitative Study

Abstract

OBJECTIVE: To unravel the perspective of patients with rheumatoid arthritis (RA) on preferred health and treatment outcomes at 2 time points during the early stage of their disease and treatment. METHODS: In a longitudinal, qualitative, explorative study, we individually interviewed 26 patients with early RA (ERA) 4-6 months after the start of initial RA treatment. Fourteen of these participants took part in 1 of 3 focus groups at least 1 year after treatment initiation. Interviews were audiotaped, transcribed verbatim, and analyzed using the constant comparison method. Two patient researchers completed the interdisciplinary research team. RESULTS: Patients with ERA ultimately strive to be normal again, literally and figuratively. Outcome preferences inherent to this urge for normality were related to aspects of disease control, physical aspects, aspects of participation, and mental aspects. Initially, patient outcome preferences in ERA were primarily related to pain relief, medication side effects and burden, and emotional well-being. Patient-preferred outcomes evolved over the ERA disease course, with subtle changes in terminology used by participants and with pain relief staying in the foreground. CONCLUSION: From a patient perspective, normality is the ultimate outcome to target in ERA. Our study produced knowledge for designing more targeted therapeutic interventions aimed at normalizing patients' health and life in all its aspects during a crucial phase of RA.