AB0372 EXPLORING REFRACTORY DISEASE &amp; PERSISTENT SYMPTOMS IN RA/POLYJIA DESPITE BDMARDS: PATIENT &amp; PROFESSIONAL EXPERIENCES
Authors: Hema Chaplin, Ibone Verhey, Nora Ng, James Galloway, Ian Scott, Debajit Sen, Rachel Tattersall, Heidi Lempp, Sam Norton
Journal: Annals of the Rheumatic Diseases (2019)

<h3>Background</h3> Refractory 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. <h3>Objectives</h3> To qualitatively explore patients and professionals understanding and experiences of refractory disease and persistent symptoms. <h3>Methods</h3> Semi-structured interviews were conducted with 13 RA and 3 Polyarticular JIA patients (on bDMARD not responding with DAS28&gt;3.2) attending four UK Rheumatology clinics. Thirty-two healthcare professionals (working in Rheumatology &gt;1year) were interviewed across 11 UK hospitals. Inductive thematic analysis was conducted, with descriptive statistics reported for quantitative data. <h3>Results</h3> Patients 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 equivalent scores. <h3>Conclusion</h3> These results highlight the potential need for a broader definition for refractory disease, and the need for holistic approaches to treatment that better support both patients, and professionals, in managing their condition. <h3>Disclosure of Interests</h3> Hema Chaplin: None declared, Ibone Verhey: None declared, Nora Ng: None declared, James Galloway Consultant for: Pfizer Inc, Ian Scott: None declared, Debajit Sen: None declared, Rachel Tattersall: None declared, Heidi Lempp: None declared, Sam Norton: None declared