AB0372 EXPLORING REFRACTORY DISEASE & PERSISTENT SYMPTOMS IN RA/POLYJIA DESPITE BDMARDS: PATIENT & PROFESSIONAL EXPERIENCES

Abstract

BackgroundRefractory disease is defined as not achieving a low disease activity target despite DMARDs. This definition does not account for patients with well controlled inflammation who experience persistent symptoms, or who have a high perceived disease impact. Furthermore, variations in professionals understanding of refractory disease and related concepts exists, with potential discordance when compared to patients understanding.ObjectivesTo qualitatively explore patients and professionals understanding and experiences of refractory disease and persistent symptoms.MethodsSemi-structured interviews were conducted with 13 RA and 3 Polyarticular JIA patients (on bDMARD not responding with DAS28>3.2) attending four UK Rheumatology clinics. Thirty-two healthcare professionals (working in Rheumatology >1year) were interviewed across 11 UK hospitals. Inductive thematic analysis was conducted, with descriptive statistics reported for quantitative data.ResultsPatients had not responded to on average 3 csDMARDs and 3.5 bDMARDs, with mean MSK-HQ=24.6, mean DAS28=4.60, and mean Patient Global=55.4. Healthcare professionals interviewed were predominantly adult trained (25/32), with mean 11.7 years’ experience, comprising rheumatologists, nurses, physiotherapists, occupational therapists, psychologists, pharmacist, podiatrist, and social worker.Key themes for both patients and professionals’ experiences of refractory disease and persistent symptoms explored were: 1) Frustrations with the disease, non-response to medication and side effects, 2) Importance of areas not captured by the DAS28, 3) Patient-centred targets/care, 4) Role of other specialties, 5) Role of comorbidities, infections and/or joint damage, and 6) Patient acceptance, adjustment and resilience. Although patients expressed hopeful expectations despite poor experiences, this was in discordance to professionals’ accounts of loss of trust/hope, disengagement and limited treatment options, with hope mainly for stratified medicines.Patient specific emergent themes identified: 1) Disease not controlled fully but manageable, 2) Drugs do not work: at all versus over time, 3) Persistent pain, fatigue and restricted mobility are most problematic symptoms, 4) Life-limiting impact: practically, psychologically/emotionally and socially, and 5) Good support from rheumatology team but holistic approach needed.Professionals grouped refractory disease into four key areas: 1) Refractory Inflammation vs Refractory Symptomology, 2) Biological processes, 3) Drug inefficacy/tolerability, and 4) Patient health beliefs/behaviours.Those with JIA had a greater variety in their experiences compared to those with RA. In addition to above themes they all highlighted the challenges of having a long-term illness so young, e.g. not knowing a life without pain or disease and lack of understanding in both themselves and others. Paediatric/Adolescent professionals noted differences in treating JIA compared to RA, e.g. joints affected and treatment guidelines/availability not based on DAS equi...

Refractory inflammatory arthritis definition and model generated through patient and multi-disciplinary professional modified Delphi process

“…A wider conceptual model was generated by the core research team to allow for consideration of the relationship between the domains and components excluded from the consensus definition and RIA, based on the Phase 1 development work [ 1 , 16 ]. The concepts and examples given here are based on findings from the systematic review highlighting the role of other contributing factors such as Serology and fixed disease factors such as disease duration [ 1 ] and qualitative work on patients’ and HCP’ experiences of RIA [ 16 ] (see S1 Fig ) such as social support and independence which included elements such as adjustment, resilience and illness/treatment beliefs which align with general theories of perceptions and adjustment to long-term illness. This followed a Biopsychosocial Formulation [ 19 , 20 ] (see Fig 3 ), with the Definition of RIA with Persistent Symptoms or Inflammation at the core, surrounded by Predisposing, Poor Prognostic, Perpetuating and Protective factors.…”

“…Components of RD were identified from: 1) qualitative interviews and focus groups with patients and HCPs [ 16 ], 2) systematic review of studies of RD in RA/PolyJIA [ 1 ], and 3) review and application of biopsychosocial theories regarding chronic illness and persistent symptoms. Firstly, an initial inductive thematic analysis of 25 patient (RA and Adult PolyJIA) and 32 HCP interviews conducted between August 2018 and April 2019 identified 17 components for common experiences of RD and persistent symptoms, whilst an additional seven were patient-specific (including JIA-specific) and four professional-specific [ 16 ] (see unpublished thematic map in S1 Fig ). This qualitative data analysis was part of a larger framework analysis, which involves five steps [ 17 , 18 ]: (i) familiarisation with data, (ii) preliminary thematic analysis to develop initial themes (presented here and [ 16 ]), with further steps occurring later which were: (iii) application of themes to the whole dataset systematically, (iv) reducing data from transcripts into summaries and organising these into a matrix (participants by themes), and (v) identifying patterns and relationships across participants and themes (manuscript in preparation).…”

“…Components of RD were identified from: 1) qualitative interviews and focus groups with patients and HCPs [16], 2) systematic review of studies of RD in RA/PolyJIA [1], and 3) review and application of biopsychosocial theories regarding chronic illness and persistent symptoms. Firstly, an initial inductive thematic analysis of 25 patient (RA and Adult PolyJIA) and 32 HCP interviews conducted between August 2018 and April 2019 identified 17 components for common experiences of RD and persistent symptoms, whilst an additional seven were patient-specific (including JIA-specific) and four professional-specific [16] (see unpublished thematic map in S1 Fig) . This qualitative data analysis was part of a larger framework analysis, which…”

Refractory Inflammatory Arthritis definition and model generated through patient and multi-disciplinary professional modified Delphi process

“…A wider conceptual model was generated by the core research team to allow for consideration of the relationship between the domains and components excluded from the consensus definition and RIA, based on the Phase 1 development work (4, 17). The concepts and examples given here are based on findings from the systematic review highlighting the role of other contributing factors such as Serology and fixed disease factors such as disease duration (4) and qualitative work on patients’ and HCP’ experiences of RIA (17) (see Suppl1) such as social support and independence which included elements such as adjustment, resilience and illness/treatment beliefs which align with general theories of perceptions and adjustment to long-term illness. This followed a Biopsychosocial Formulation (18, 19) (see Figure 3), with the Definition of RIA with Persistent Symptoms or Inflammation at the core, surrounded by Predisposing, Poor Prognostic, Perpetuating and Protective factors.…”

“…Components of RD were identified from: 1) qualitative interviews and focus groups with patients and HCPs (17), 2) systematic review of studies of RD in RA/PolyJIA (4), and 3) review and application of biopsychosocial theories regarding chronic illness and persistent symptoms. Firstly, inductive thematic analysis of 25 patient and 32 HCP interviews identified 17 components for common experiences of RD and persistent symptoms, whilst an additional seven were patient-specific (including JIA-specific) and four professional-specific (17) (see Suppl1). Secondly, a systematic review of existing definitions (4) identified three key elements of RD: 1) treatment, 2) presence or absence of inflammation and 3) symptoms and impact.…”