Background Unravelling patients' preferences with regards to disease and treatment outcomes, is crucial to deliver patient-centred and high-quality care. Previous qualitative studies in Rheumatoid Arthritis (RA) have provided valuable findings in this field; yet to date, none have focused on patient-preferred outcomes in early RA (eRA), often the most overwhelming and precarious disease stage.
Objectives We aimed (1) to prospectively unravel patient-preferred outcomes for disease and treatment in eRA; (2) to explore the evolution of patient-preferred outcomes within the eRA trajectory; (3) to capture patients' five most preferred outcomes in eRA.
Methods This qualitative study was based on phenomenological presumptions and we applied a longitudinal design with 2 semi-structured interview moments in the early course of RA. At time point 1 (T1), 18 women and 8 men were individually interviewed 4 to 6 months (median:4 months) after their initial RA treatment initiation (T0). The second time point (T2) was held at least one year after T0 (median:14 months), in which a non-selected subgroup of patients interviewed at T1 (9 women and 5 men) participated in 1 of 3 focus groups. A modified nominal group technique was applied to structure the focus groups and to support the process of outcome prioritizing. Data were analysed using open and axial coding, and 2 independent patient research partners ensured the patient perspective in the analyses.
Results Patients expressed one overarching preferred outcome in eRA: return to being normal, which was individually conceptualized. All patient-preferred outcomes derived were categorized into four main themes: aspects of disease control, physical aspects, aspects of participation and mental aspects. No new preferred outcomes emerged at T2, but their conceptualization was more nuanced, and could be dynamic over time. Relief of physical symptoms, including pain and fatigue, was the predominant concern at T1. However, whereas “pain” remained a highly preferred treatment target at T2, even for those experiencing an acceptable pain level, relief of fatigue was not singled out anymore at T2, despite comparable VAS fatigue levels. An absolute top five of most preferred outcomes in eRA could not be composed because of different individual valuation and various connections between outcomes. Nevertheless, pain relief and aspects related to function or participation were ranked highest in all focus groups.
Conclusions Pain relief is and remains highly preferred by patients with eRA, in contrast to relief of fatigue that gradually declined in importance. Ultimately, patients wished to return to a normal lifestyle. The conceptualization of outcomes could vary over time. Our findings can assist healthcare professionals in patient-centred assessment of disease and treatment outcomes and provide valuable insights for future timely and well-targeted clinical interventions in RA.
Acknowledgements We thank both patients and their healthcare professionals for their participation in this study.
Disclosure of Interest None declared