P093 What’s in a name? Misnaming and renaming of Juvenile Idiopathic Arthritis has long-term impacts

Abstract

Abstract Background/Aims Juvenile Idiopathic Arthritis (JIA) is a heterogenous group of disorders characterised by chronic joint inflammation of unknown aetiology lasting 6+ weeks, with onset before the age of 16. Historically, some patients with JIA have been labelled as having adult-onset disorders such as Rheumatoid Arthritis (RA) in order to facilitate access to medication. Some have also been incorrectly reclassified at age 16 (with their JIA being relabelled as RA) due to lack of understanding by some healthcare professionals in adult clinics that children and young people get arthritis too. Whilst treatments for RA and JIA are broadly similar, important differences in treatment, management, prognosis and extra-articular manifestations remain. This collaborative study between three patient organisations investigated the extent of the issues arising from misnaming and/or renaming of JIA in a UK population. Methods Adults in the UK aged 18+ who had any diagnosis of a musculoskeletal or rheumatic condition (RMD) were invited to complete a voluntary online survey. Surveys were disseminated through webpages, social media and email mailing lists, enabled by the patient organisations Juvenile Arthritis Research, Arthur’s Place and The Wren Project. Respondents provided information about their diagnosis, experiences, and attitudes across a range of themes and topics. Results In total, 532 respondents with any form of arthritis, and/or other rheumatic or musculoskeletal condition completed the survey (64% female; 68% White ethnicity; median age 35.5 years), covering a primary diagnosis of different rheumatic conditions; 185 (35%) had a second or subsequent additional rheumatic disease. Of 169 respondents with a primary diagnosis of JIA and symptom onset prior to age sixteen, 87 (52%) reported that a doctor or healthcare professional has subsequently told them (whilst under adult services) that their condition is now called something other than Juvenile Arthritis once they reached adulthood. In addition, 134 (25%) respondents reported a primary diagnosis of RA; of these 15 (11%) had symptom onset prior to age 16, indicating their diagnosis should have been JIA. Conclusion Given the importance of accurate diagnosis for patients, both for a patient’s sense of identity and for treatment, care and prognosis reasons, the name given to a disease matters. With 11% of patients with a diagnosis of RA having paediatric-onset JIA, and 52% with JIA being incorrectly told their diagnosis has changed post-16, there are important implications for patients and caregivers. Improved awareness and understanding of the importance of correct labelling of RMDs may help reduce confusion and uncertainty and improve access to appropriate care. Disclosure R.P. Beesley: None. R.M. Beesley: None. K. Middleton: None. A. McBride: None. E.M.D. Smith: None. M.W. Beresford: None.