Management of Refractory Disease and Persistent Symptoms in Inflammatory Arthritis: Qualitative Framework analysis of interviews with patients and healthcare professionals

Chaplin, Hema; Simpson, Carol; Wilkins, Kate; Meehan, Jessica; Ng, Nora; Galloway, James; Lempp, Heidi; Scott, Ian C; Sen, Debajit; Tattersall, Rachel; Moss-Morris, Rona; Norton, Sam

Abstract

Objectives: This study aims to explore patients’ and clinicians’ experiences of managing and living with refractory disease (RD) and persistent physical and emotional symptoms (PPES) in patients with Rheumatoid Arthritis or Polyarticular Juvenile Idiopathic Arthritis from their perspectives through interviews and/or focus groups.
Methods: A qualitative exploration with 25 patients and 32 multi-disciplinary rheumatology HCPs was conducted to obtain participants respective understanding and experiences of managing RD/PPES, and its impact on the patient-professional relationship. A pragmatic epistemology approach with framework analysis was employed.
Results: Four key themes were identified from both patients and professionals’ management of RD/PPES: 1) Risk/Perpetuating Factors/Triggers, 2) Need for Patient Centred Holistic Approach to Care, Diagnosis and Treatment, 3) Discordance and Impact on Patient-Practitioner Relationship and 4) Current Problems within Managing RD/PPES. These themes covered 22 sub-themes, with none being patient-specific and seven were HCP-specific. Suggestions for potential management strategies were highlighted throughout, such as involving other specialties or multi-disciplinary team, assessing/treating patient-reported outcome measures and psychosocial factors, patient (re)education, need for adjustments/aids or adaptations, checking diagnosis and further investigations/imaging, and optimising medications.
Conclusion: Management strategies need to be developed that enable appropriate treatment plans for those with RD/PPES that account for wider biopsychosocial factors beyond inflammation and reduce discordance in the patient-practitioner relationship.

Citation

Chaplin, H., Simpson, C., Wilkins, K., Meehan, J., Ng, N., Galloway, J., …Norton, S. (2024). Management of Refractory Disease and Persistent Symptoms in Inflammatory Arthritis: Qualitative Framework analysis of interviews with patients and healthcare professionals. Rheumatology Advances in Practice, 8(3), Article rkae076. https://doi.org/10.1093/rap/rkae076

• Journal Article Type: Article
• Acceptance Date: May 22, 2024
• Online Publication Date: Jun 10, 2024
• Publication Date: Jun 10, 2024
• Deposit Date: Jun 17, 2024
• Publicly Available Date: Jul 8, 2024
• Journal: Rheumatology Advances in Practice
• Print ISSN: 2514-1775
• Publisher: Oxford University Press
• Peer Reviewed: Peer Reviewed
• Volume: 8
• Issue: 3
• Article Number: rkae076
• DOI: https://doi.org/10.1093/rap/rkae076
• Keywords: Multi-disciplinary Team, Persistent Symptoms, Polyarticular JIA, Refractory, Rheumatoid Arthritis, Qualitative
• Public URL: https://keele-repository.worktribe.com/output/852075
• Publisher URL: https://academic.oup.com/rheumap/advance-article/doi/10.1093/rap/rkae076/7690749