Young people’s perspectives on patient-reported outcome measures in inflammatory arthritis: results of a multicentre European qualitative study from a EULAR task force

• DOI: 10.1136/rmdopen-2020-001517
• Publication Date: 2021-01-29T16:17:19Z
• Authors: Erika Mosor; Paul Studenic; Alessia Alunno; Ivan Padjen; Wendy Olsder; Sofia Ramiro; Ilaria Bini; Nele Caeyers; Laure Gossec; Marios Kouloumas; Elena Nikiphorou; Simon Stones; Tanita-Christina ...; Tanja A Stamm
• Keywords: Prom; Thematic Analysis; Patient-reported outcome

Introduction Although patient-reported outcome measures (PROMs) are increasingly used in clinical practice and research, it is unclear whether these instruments cover the perspective of young people with inflammatory arthritis (IA). The aims this study were to explore PROMs commonly IA adequately from different European countries. Methods A multinational qualitative was conducted Austria, Croatia, Italy Netherlands. Young either rheumatoid (RA), juvenile idiopathic (JIA), Still’s disease, psoriatic (PsA) or spondyloarthritis (SpA), aged 18–35 years, participated semistructured focus group interviews. Thematic analysis data saturation defined as no new emergent concepts at least three subsequent groups. Results Fifty-three patients (21 RA/JIA/Still’s, 17 PsA, 15 SpA; 72% women) 12 Participants expressed a general positive attitude towards emphasised their importance practice. In addition, 48 lower level extracted summarised into 6 higher describing potential issues for improvement. These included: need lay-term information regarding purpose using PROMs; updates certain outdated items digital technology acquisition. Some participants admitted tendency rate pain, fatigue disease activity differently what they actually felt various reasons. Conclusions Despite attitude, suggested areas PROM development ensure that important included, making relevant over entire course chronic disease.