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Inflammatory arthritis
Original research
Young people’s perspectives on patient-reported outcome measures in inflammatory arthritis: results of a multicentre European qualitative study from a EULAR task force
  1. Erika Mosor1,
  2. Paul Studenic2,3,
  3. Alessia Alunno4,
  4. Ivan Padjen5,6,
  5. Wendy Olsder7,8,
  6. Sofia Ramiro9,10,
  7. Ilaria Bini7,11,
  8. Nele Caeyers12,13,
  9. Laure Gossec14,15,
  10. Marios Kouloumas16,
  11. Elena Nikiphorou17,18,
  12. Simon Stones19,20,
  13. Tanita-Christina Wilhelmer7,21 and
  14. Tanja A Stamm1
  1. 1Section for Outcomes Research, Centre for Medical Statistics, Informatics and Intelligent Systems, Medical University Vienna, Wien, Austria
  2. 2Internal Medicine 3, Division of Rheumatology, Medical University Vienna, Wien, Austria
  3. 3Department of Medicine (Solna), Division of Rheumatology, Karolinska Institute, Stockholm, Sweden
  4. 4Department of Medicine, Rheumatology Unit, University of Perugia, Perugia, Umbria, Italy
  5. 5Division of Clinical Immunology and Rheumatology, Department of Internal Medicine, University Hospital Centre Zagreb, Zagreb, Croatia
  6. 6University of Zagreb, School of Medicine, Zagreb, Croatia
  7. 7EULAR Young PARE, Zürich, Switzerland
  8. 8Youth-R-Well, Nieuwegein, The Netherlands
  9. 9Rheumatology, Leiden University Medical Center, Leiden, South Holland, The Netherlands
  10. 10Rheumatology, Zuyderland Medical Centre Heerlen, Heerlen, Limburg, The Netherlands
  11. 11Anmar Young, Rome, Italy
  12. 12EULAR PARE, Zurich, Switzerland
  13. 13ReumaNET, Leuven, Belgium
  14. 14Pierre Louis Institute of Epidemiology and Public Health, Sorbonne University, Paris, France
  15. 15APHP, Rheumatology Department, Pitie Salpetriere University Hospital, Paris, France
  16. 16Cyprus League Against Rheumatism, Nikosia, Cyprus
  17. 17Centre for Rheumatic Diseases, King's College London, London, UK
  18. 18Rheumatology Department, King's College Hospital NHS Trust, London, UK
  19. 19EULAR Patient Research Partner, Manchester, UK
  20. 20University of Leeds, Leeds, West Yorkshire, UK
  21. 21Austrian Rheumatism League, Maria Alm, Austria
  1. Correspondence to Dr Tanja A Stamm; tanja.stamm{at}meduniwien.ac.at

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.

  • patient-reported outcome measures
  • qualitative research
  • arthritis
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

http://dx.doi.org/10.1136/rmdopen-2020-001517

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    Footnotes

    • Twitter @Stiddyo, @ivan_padjen, @kouloumasm, @ElenaNikiUK, @SimonRStones

    • Contributors EM, PS, AA, IP, WO, SR, IB, NC, LG, MK, EN, SS, T-CW and TAS were responsible for the study conceptualisation and design. EM, IP, WO and AA conducted the focus groups. Data coding and initial analyses were primarily undertaken by the first author (EM). EM, PS, AA, IP, WO, SR, IB, NC, LG, MK, EN, SS, T-CW and TAS were involved in interpreting the data, writing and reviewing the manuscript. EM was responsible for the visualisation, including tables and figure. WO, IB, NC, MK, SS and T-CW are patient representatives/advocates.

    • Funding This project was funded by the EULAR; grant number CLI100.

    • Competing interests PS reports grants from AbbVie, outside the submitted work; IP reports personal fees from Abbvie, personal fees from Novartis, personal fees from Roche, personal fees from Sandoz, personal fees from Sanofi, outside the submitted work; SR reports personal fees from AbbVie, personal fees from Eli Lilly, personal fees from MSD, personal fees from Novartis, personal fees from Sanofi, personal fees from UCB, outside the submitted work; LG reports grants and personal fees from Amgen, grants from Galapagos, grants and personal fees from Janssen, grants and personal fees from Lilly, grants and personal fees from Pfizer, grants from Sandoz, grants from Sanofi, personal fees from AbbVie, personal fees from BMS, personal fees from Biogen, personal fees from Celgene, personal fees from Gilead, personal fees from Novartis, personal fees from Samsung Bioepis, personal fees from Sanofi-Aventis, personal fees from UCB, outside the submitted work; EN reports personal fees from Abbvie, personal fees from Celltrion, personal fees from Gilead, personal fees from Lilly, personal fees from Pfizer, personal fees from Sanofi, outside the submitted work; SS reports personal fees from Actelion, personal fees from CISCRP, personal fees from Janssen, personal fees from Parexel, outside the submitted work; TAS reports grants from AbbVie, grants and personal fees from Roche, personal fees from Sanofi Genzyme, personal fees from Takeda, outside the submitted work.

    • Patient consent for publication Not required.

    • Ethics approval The study was approved by the local ethics committees including the Ethics Committee of the Medical University of Vienna, Austria EK Number 2117/2017. All participants were informed about the purpose and procedures of the study and gave their written informed consent in accordance with the Declaration of Helsinki.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement No data are available. This is a qualitative study and therefore the data generated are not suitable for sharing beyond that contained within the report. Further information can be obtained from the corresponding author.