Background Although patient-reported outcome measures (PROMs) are extensively used in clinical practice and research, it is unclear whether the most commonly used instruments adequately cover the perspective of young people with chronic inflammatory arthritis.
Objectives To investigate whether the aspects important to young people with inflammatory arthritis are sufficiently covered by the PROMs that are widely used in clinical practice and research.
Methods A qualitative, multicentre focus group interview study was conducted in Austria, Croatia, Italy and the Netherlands in order to inform a EULAR-funded taskforce. Three groups of young people (aged 18-35 years) with either (1) rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA) and Still’s disease, (2) psoriatic arthritis (PsA), or (3) axial spondyloarthritis (SpA) were interviewed at each centre. The interview guide was based on the WHO International Classification of Functioning, Disability and Health (ICF) to comprehensively cover all aspects of functioning in daily life. It also included questions on the perspectives and views of the participants on selected PROMs (Pain scales, Patient Global Assessment [PGA], FACIT Fatigue Scale, The Health Assessment Questionnaire [HAQ]/Bath Ankylosing Spondylitis Functional Index [BASFI], and The 36-Item Short Form Health Survey [SF-36]). All interviews were conducted by trained local investigators, audio-recorded, transcribed verbatim, and analysed using a modified form of ‘meaning condensation’. During a face-to-face meeting of the task-force members, the concepts were reformulated and organized into a scheme of higher and lower-level concepts.
Results Thematic saturation was reached after 12 focus groups with 53 participants (21 with RA/JIA/Still’s, 15 with SpA, 17 with PsA; 72% female, mean age 28, SD±5), resulting in 18 hours and 22 minutes of recorded time and 269 pages of transcript. The analysis revealed aspects of functioning in daily life important to young people with inflammatory arthritis which were mentioned in all countries. Furthermore, 55 concepts emerged with regard to PROMs and were summarized into seven higher-level concepts. The table depicts these higher-level concepts including quotes from the interviews.
Conclusion The evaluation of young patients’ perspectives should probably reach beyond the topics/aspects covered in the most commonly used PROMs. Accordingly, tailoring the assessments to specific needs of young people should be considered.
Acknowledgement We would like to thank the participants for taking part in the study and for sharing their valuable perspectives.
Disclosure of Interests Erika Mosor: None declared, Paul Studenic: None declared, Alessia Alunno: None declared, Ivan Padjen: None declared, Wendy Olsder: None declared, Sofia Ramiro Grant/research support from: MSD, Consultant for: AbbVie, Lilly, MSD, Novartis, Pfizer, Sanofi, Speakers bureau: AbbVie, Lilly, MSD, Novartis, Pfizer, Sanofi, Ilaria Bini: None declared, Nele Caeyers: None declared, Laure Gossec Grant/research support from: AbbVie, BMS, Celgene, Janssen, Lilly, MSD, Novartis-Sandoz, Pfizer, Sanofi, and UCB, Consultant for: AbbVie, Biogen, BMS, Celgene, Janssen, Lilly, MSD, Nordic Pharma, Novartis-Sandoz, Pfizer, Roche, Sanofi, and UCB, Consultant for: L Gossec has received honoraria from Celgene as investigator for this study, Marios Kouloumas: None declared, Elena Nikiphorou: None declared, Simon Stones Consultant for: SS has provided consultancy services to Envision Pharma Group, though this is not related to the contents of this abstract., Speakers bureau: SS has undertaken speaking engagements for Actelion, eyeforpharma, Four Health, Janssen and Roche, though these are not related to the contents of this abstract., Tanita-Christina Wilhelmer: None declared, Tanja Stamm Grant/research support from: TS has received grant support from AbbVie., Paid instructor for: TS has received speaker fees from AbbVie, Janssen, MSD, Novartis, and Roche.
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