Background Patient-reported outcomes have become widely used in order to integrate the patient’s perspective into the assessment and treatment of Rheumatoid Arthritis (RA). Research focusing on important and meaningful outcomes from the patient’s perspective in the early stage of RA can promote a patient-centered approach from the start of treatment and therefore may prevent certain unmet needs in this chronic condition.
Objectives To explore the patient’s perspective on outcomes in the early phase of their RA.
Methods A qualitative study was conducted in which semi-structured, in-depth interviews were performed with 26 patients with early RA (disease duration ≤ 1year) a few months after initiation of their initial antirheumatic treatment. A purposive sample was drawn from patients enrolled in the CareRA trial, a multicentre RCT across Flanders comparing different intensive combination treatment strategies for early RA with conventional DMARDs plus step-down glucocorticoids. Interviews were tape recorded, transcribed verbatim and analyzed thematically using the constant comparison method. Two patient research partners with RA were actively involved in constructing the interview guide and the analysis process.
Results Respondents had a median (range) age of 55 years (22-68), 17 (68%) were women, and the median (range) time since treatment start was 4,3 months (3,6-7,3). Out of the data three main themes emerged: physical well-being, functional well-being and psychological well-being, all contributing to one ultimate outcome: a quality of existence comparable to a status before start of their disease. Relief of physical symptoms as well as an optimal physical functioning and mobility were mentioned by all respondents. Drug free remission, no negative drug effects, good health and a normal aging process were other desirable outcomes regarding physical well-being. Functional well-being comprises the outcomes with regard to an optimal daily functioning in performing activities and societal roles. Key words here were: independency and an optimal performance level. Additional outcomes of this second theme were improvement of sleep quality and retrieving physical energy needed for a good physical functioning. Psychological well-being involves emotional well-being, regaining self-esteem, vitality, enjoying life again and feeling healthy again.
Conclusions In the very early phase of the disease, patients mainly focus on the physical symptoms with pain relief as a priority outcome, as well as an optimal physical functioning and mobility. The themes emerging from this study can assist healthcare professionals in optimizing specific interventions for patients with early RA. We hypothesize that an early patient-centered approach can contribute to better disease and treatment outcomes in the long term. This qualitative study was a first step in exploring patient-centered outcomes in early RA. Further prospective quantitative research and implementation research will be needed.
Acknowledgements The authors thank the healthcare professionals and their patients for their participation in this study.
Disclosure of Interest None Declared