Shared Decision Making: A phenomenological exploration into the experiences and interpretations of patients with early rheumatoid arthritis

Introduction Shared decision-making (SDM) is a principal recommendation in the management of patients with Rheumatoid Arthritis (RA), and early treatment is crucial to achieving the target of remission, or low disease activity. Evidence indicates it is unclear whether SDM is happening in clinical practice (Barton and Decary, 2020; Morrison et al., 2022) so further research is warranted. Aim. To explore whether SDM is occurring and what the experiences and interpretations are of patients with Early Rheumatoid Arthritis (ERA) participating in SDM within a Multi-Disciplinary team (MDT) Methods: A qualitative, longitudinal research design and face-to-face semi-structured interviews were conducted over four specific targeted timelines during one year. Eleven patients, all with new onset ERA were recruited from one NHS out-patient rheumatology department. Interpretive phenomenology analysis (IPA) was used to analyse the findings. Findings: For the majority of patients in this study SDM did not occur in Primary Care because they did not feel heard. Family and friends played a key role across all time intervals and demonstrated their expertise by assisting with participant help-seeking and decision-making during delays in referral by some GPs Two concepts that held relevance to participants in their early treatment journey were a need to feel heard and a sense of togetherness. Both indicated a sense of connectedness and SDM mostly with nurses and Occupational Therapist (OT). The competing demands of meeting National guidance, such as Treat-to-Target (T2T) and SDM, did lead to apparent tensions among different health professionals, indicated by poor information exchange, and feeling as if care had become depersonalised over time. Conclusions: Family and friends need greater recognition as key members of the rheumatology MDT, and defined roles within the team, at each treatment stage in ERA. As part of early engagement with Primary Care, patient expertise in symptom experiences needs to be given greater recognition when considering referral into Primary Care. SDM is not isolated to health professionals and patient dyad. SDM needs to be recognised as an approach occurring between participants, family and friends, and the health professional, and so as a key player in decisions, should be recognised within national rheumatology guidance