Living with palindromic rheumatism: a qualitative interview study

Objectives

Palindromic rheumatism (PR) is an unpredictable and under-researched inflammatory condition, and patients with PR are at risk of developing inflammatory arthritis (IA). This study aimed to explore patients’ perceptions and experiences of living with PR, including symptoms, impact, treatment outcomes and potential progression to IA.

Methods

Patients were recruited from ongoing cohort studies identifying individuals at risk of developing IA. Semi-structured interviews were conducted at two UK sites. Data were analysed using reflexive thematic analysis. Patient research partners co-produced the interview schedule and contributed to coding decisions.

Results

Eight patients were interviewed. Three themes (seven subthemes) were identified: experiencing symptoms (symptoms, perceptions of triggers, referral experiences); impact of symptoms (activity limitations, psychological impact); treatment expectations and knowledge seeking (treatment outcomes and progression, information and support needs). Symptom severity was likened to that associated with severe physical injury, and PR impacted on daily activities and caused psychological distress, but referral delays were frequently reported. Patients expressed concerns about taking medication for PR, primarily due to side effects. Most highlighted a lack of information about PR (e.g. medication options and self-management advice) but varied in how much they wanted to understand about PR progression and treatment options.

Conclusion

This study captured valuable insights into the perceptions and experiences of PR, from the perspective of patients. Findings highlight the severity of symptoms and impact of the condition. Further work to standardize classification criteria and outcome measurement in PR is critical to facilitate meaningful clinical trials in this area.