Characteristics of refractory disease and persistent symptoms in inflammatory arthritis: Qualitative framework analysis of interviews with patients and health care professionals
Hema Chaplin, Carol Simpson, Kate Wilkins, Jessica Meehan, Nora Ng, James Galloway, Ian C. Scott, Debajit Sen, Rachel Tattersall, Rona Moss‐Morris, Heidi Lempp, Sam NortonAbstract
Objectives
This study aims to explore patients' and clinicians' understanding and experiences of refractory disease (RD) and persistent physical and emotional symptoms (PPES) in patients with inflammatory arthritis (IA), namely rheumatoid arthritis or polyarticular juvenile idiopathic arthritis from their perspectives through interviews and/or focus groups.
Design
A qualitative study was conducted, following a pragmatic epistemology approach with framework analysis employed.
Methods
Semi‐structured interviews or focus groups with IA patients (n = 25) and multi‐disciplinary rheumatology HCPs (n = 32) were conducted at one time point to obtain participants respective understanding and experiences of managing RD/PPES, and its impact on the patient‐professional relationship.
Results
Three key themes were identified from both patients and professionals' experiences of RD/PPES: (1) relevant treatment experiences, (2) symptoms (with or without inflammation) and (3) impact: physical, psychological and social. These themes included 28 specific categories that would be considered as components characterizing RD/PPES, most common to both patients and HCPs with six being patient‐specific and only one HCP‐specific. The specific biopsychosocial symptoms and impacts of RD/PPES pertain to pain, fatigue, stiffness, joint involvement and physical, psychological and social functioning and quality of life, covering disease‐related distress, mobility and independence. Wider influential factors such as comorbidities, non‐adherence, health/medication beliefs and behaviours and social support were also identified.
Conclusion
Common persistent symptoms that have both mental and physical impact characterize RD/PPES in IA and therefore a more integrated holistic approach to treatment is needed from multi‐disciplinary HCPs, including health psychologists.