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

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 Wilhelmer, Tanja A. Stamm (Corresponding author)

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

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 of this study were to explore whether PROMs commonly used in IA adequately cover the perspective of young people from different European countries.

METHODS: A multinational qualitative study was conducted in Austria, Croatia, Italy and the Netherlands. Young people with either rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), Still's disease, psoriatic arthritis (PsA) or spondyloarthritis (SpA), aged 18-35 years, participated in semistructured focus group interviews. Thematic analysis was used and data saturation was defined as no new emergent concepts in at least three subsequent focus groups.

RESULTS: Fifty-three patients (21 with RA/JIA/Still's, 17 with PsA, 15 with SpA; 72% women) participated in 12 focus groups. Participants expressed a general positive attitude towards PROMs and emphasised their importance in clinical practice. In addition, 48 lower level concepts were extracted and summarised into 6 higher level concepts describing potential issues for improvement. These included: need for lay-term information regarding the purpose of using PROMs; updates of certain outdated items and using digital technology for data acquisition. Some participants admitted their tendency to rate pain, fatigue or disease activity differently from what they actually felt for various reasons.

CONCLUSIONS: Despite their general positive attitude, young people with IA suggested areas for PROM development to ensure that important concepts are included, making PROMs relevant over the entire course of a chronic disease.

Original languageEnglish
Article numbere001517
Number of pages12
JournalRMD Open
Volume7
Issue number1
DOIs
Publication statusPublished - 29 Jan 2021

Keywords

  • arthritis
  • patient-reported outcome measures
  • qualitative research

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