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

Abstract

ABSTRACTObjectiveVarious definitions have been proposed for Refractory Disease in people with Rheumatoid Arthritis (RA); however, none were generated for Polyarticular Juvenile Idiopathic Arthritis (PolyJIA) or involving adult and paediatric multidisciplinary healthcare professionals and patients. The study aim is to redefine Refractory Disease, using Delphi methodology to include these cohorts.MethodsThree rounds of surveys with experts (one nominal group and two online) to achieve consensus using a predetermined cut-off were conducted voting on: a) name, b) treatment and inflammation, c) symptoms and impact domains, and d) rating of individual components within domains.ResultsVotes were collected across three rounds from Patients, Researchers and nine multi-disciplinary healthcare professional groups (n=106). Refractory Inflammatory Arthritis was the most popular name. Regarding treatment and inflammation, these were voted to be kept broad rather than specifying numbers/cut-offs. From 10 domains identified to capture symptoms and disease impact, six domains reached consensus for inclusion: 1) Disease Activity, 2) Joint Involvement, 3) Pain, 4) Fatigue, 5) Functioning and Quality of Life, and 6) Disease-Modifying Anti-Rheumatic Drug Experiences. Within these domains, 18 components, from an initial pool (n=73), were identified as related and important to capture multi-faceted presentation of Refractory Inflammatory Arthritis, specifically in RA and PolyJIA.ConclusionRefractory Inflammatory Arthritis has been found to be broader than not achieving low disease activity, with wider biopsychosocial components and factors incorporating Persistent Inflammation or Symptoms identified as important when defining this concept. This definition needs further refinement and validation to assess utility to identify patients with unmet needs.What is already known on this topicIn recent years within Rheumatology, parallel bodies of work have reached similar conclusions regarding the broadening of the Refractory or the wider Difficult-to-Treat concept.What this study addsIn this paper, we provide a different angle to define, measure, and conceptualise Refractory Inflammatory Arthritis (RIA), using health psychology theory across PolyJIA and RA with the input of patients, rheumatologists, and multi-disciplinary HCPs.We support and extend recent definitions of refractory rheumatoid arthritis (1, 2) by detailing a three-part definition identified as important to both patients and multi-disciplinary healthcare professionals that can also be applied to Polyarticular Juvenile Idiopathic Arthritis: 1) Treatment, 2) Inflammation, and 3) Symptoms and Impact with 18 specific components within 6 domains.We have applied a biopsychosocial formulation model for Refractory Inflammatory Arthritis covering perpetuating and protective factors to guide management strategies and present wider contextual factors involved in the experience of Refractory Inflammatory Arthritis.How this study might affect research, practice or policyThe development of the Refractory Inflammatory Arthritis definition presented here included consideration of content and discriminant validity indicators to provide a clinical and research tool to appropriately classify and measure Refractory Inflammatory Arthritis with alignment to routinely used measures (3).