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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


Hema Chaplin

Carol Simpson

Kate Wilkins

Jessica Meehan

Nora Ng

James Galloway

Heidi Lempp

Debajit Sen

Rachel Tattersall

Rona Moss-Morris

Sam Norton


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.


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.

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
Keywords Multi-disciplinary Team, Persistent Symptoms, Polyarticular JIA, Refractory, Rheumatoid Arthritis, Qualitative
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Management of refractory disease and persistent symptoms in inflammatory arthritis: qualitative framework analysis of interviews with patients and healthcare professionals (3.1 Mb)


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Copyright Statement
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (, which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.

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