Background:Although patient-reported outcome measures (PROMs) are widely used in clinical practice and research, it is unclear if these instruments adequately cover the perspective of young people (18-35 years) with inflammatory arthritis (IA). We recently performed focus groups on PROMs with 53 young IA patients from 4 European countries, but the perspective of these patients has never been explored on a large scale.Objectives:To explore personal experience, opinions and beliefs of young people with IA across Europe concerning PROMs content, characteristics and ways of administration in order to inform EULAR points to consider (PtC) for including the perspective of young patients with IA into PROMs.Methods:Based on the results of our previous qualitative study, a task force including patients, rheumatologists and health professionals developed an online survey. The survey covered personal experience, preferences and opinions concerning PROMs. After being pilot tested and revised accordingly, the survey was distributed through the EULAR people with arthritis and rheumatism in Europe (PARE), Young PARE networks and the Emerging EULAR Network (EMEUNET).Results:547 people (88% females) from 29 countries aged 18-35 years with a diagnosis of juvenile idiopathic arthritis, rheumatoid arthritis, Still’s disease, psoriatic arthritis or spondyloarthritis completed the survey (Figure 1). Thirty-seven percent of respondents reported they never filled a PROM. A North-South and West-East Europe gradient was observed (30.4% vs 56.3% and 25.5% vs 58.8% respectively). Figure 2 outlines key findings of our survey. Among respondents having filled PROMs (n=313), two thirds perceived their access to PROM results useful for self-management of their health. Discomfort while filling PROMs was an issue for nearly half of the respondents, as questions were perceived as scaring or not relevant. This discomfort, the fear of judgement, or inadequate assessed time frames were major reasons for difficulties in translating the health experience into a rating scale. Still 75% use their own experience in the past as reference. Among several reasons, people scored differently from what they felt to emphasize how much better or worse they felt from previous assessment. Concerning preferences of numerical rating scales (NRS) or visual analogue scales (VAS) explored in all respondents regardless having ever filled in PROMs, those in favour of VAS mainly reasoned this by having more possibilities to select and those favouring NRS by better readability and interpretation. Maintaining a sitting position, preparing food, doing physical activity, intimacy and sleep problems were the items selected most frequently in the survey as in the qualitative study to be included in PROMs. The implementation of discussion on self-management, education/work and support possibilities at regular clinic visits was considered important by over 60% of responders. Overall, electronic capturing of PROMs was preferred over paper-based questionnaires (57% vs 13%).Conclusion:Our survey explored for the first time the personal experience and opinions of young people with IA concerning PROMs on a large scale and confirmed the results obtained in the qualitative study. This survey informed the EULAR PtC for including the perspective of young patients with IA into PROMs.References:[1] Mosor E et al. Arthritis Rheumatol. 2019; 71 (suppl 10)Disclosure of Interests:Alessia Alunno: None declared, Erika Mosor: None declared, Tanja Stamm Grant/research support from: AbbVie, Roche, Consultant of: AbbVie, Sanofi Genzyme, Speakers bureau: AbbVie, Roche, Sanofi, Paul Studenic Grant/research support from: Abbvie
Different pathways, same goals: A large‐scale qualitative study of autistic and non‐autistic patient‐generated definitions of recovery from an eating disorder
