Unmet needs in patients with rheumatoid arthritis judged in remission by the rheumatologist: a semi-structured interview study

Objectives To map unmet care needs in patients with rheumatoid arthritis (RA) who are in remission, investigate perceptions on the cause and impact of such needs, and explore experiences and beliefs about suitable care strategies to address these issues. Methods Individual in-depth semi-structured interviews were conducted in patients with RA judged in remission by rheumatologists until data saturation. Qualitative data analysis was performed according to a guide, based on the constant comparative method. Results Seventeen patient interviews were included for analysis. Patients identified a variety of persistent symptoms, like fatigue or anxiety, despite being judged in remission, reporting a substantial impact on different life domains. Multiple issues were found to be coexistent, reinforcing each other. Uncertainty thrived in patients regarding the aetiology of their persistent problems, with symptoms often attributed to undetectable inflammation. Furthermore, patients were unsure which additional care strategies could be of help. Often, rheumatologists were perceived to give insufficient attention to the unmet needs of patients. Patients recognised the potential benefits of receiving support from a multidisciplinary team, but identified important barriers limiting engagement with such care, including a lack of knowledge on the team’s availability and competences. Care was preferred to be tailored to individual needs and encouraging. Conclusion Our findings emphasise that unmet needs in patients with RA in remission require and deserve additional attention. Although some barriers were identified, patients recognised the potential benefits of receiving multidisciplinary support. In this regard, complementary care should be needs-based, flexible, and empowering.