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Letter
EULAR points to consider for including the perspective of young patients with inflammatory arthritis into patient-reported outcomes measures
  1. Paul Studenic1,2,
  2. Tanja A Stamm3,4,
  3. Erika Mosor3,4,
  4. Ilaria Bini5,6,
  5. Nele Caeyers7,
  6. Laure Gossec8,9,
  7. Marios Kouloumas10,
  8. Elena Nikiphorou11,12,
  9. Wendy Olsder6,13,
  10. Ivan Padjen14,
  11. Sofia Ramiro15,16,
  12. Simon Stones7,17,
  13. Tanita-Christina Wilhelmer6,18 and
  14. Alessia Alunno19,20
  1. 1Department of Internal Medicine 3, Division of Rheumatology, Medical University of Vienna, Wien, Austria
  2. 2Department of Medicine (Solna), Division of Rheumatology, Karolinska Institute, Stockholm, Sweden
  3. 3Ludwig Boltzmann Institut für Arthritis und Rehabilitation, Wien, Austria
  4. 4Section for Outcomes Research, Center for Medical Statistics, Informatics and Intelligent Systems, Medical University of Vienna, Vienna, Austria
  5. 5Anmar Young, Rome, Italy
  6. 6EULAR Young PARE, Zürich, Switzerland
  7. 7EULAR PARE, Zürich, Switzerland
  8. 8INSERM, Institut Pierre Louis d'Epidémiologie et de Santé Publique, INSERM, Sorbonne Universite, Paris, France
  9. 9AP-HP.Sorbonne Université, Rheumatology department, Hopital Universitaire Pitie Salpetriere, Paris, France
  10. 10Cyprus League Against Rheumatism, Aglantzia, Cyprus
  11. 11Centre for Rheumatic Diseases, King's College London, London, UK
  12. 12Rheumatology Department, King's College Hospital, London, UK
  13. 13Youth-R-Well, Nieuwegein, The Netherlands
  14. 14Department of Internal Medicine, Division of Clinical Immunology and Rheumatology, University Hospital Centre Zagreb, Zagreb, Croatia
  15. 15Department of Rheumatology, Leiden University Medical Center, Leiden, The Netherlands
  16. 16Rheumatology, Zuyderland Medical Centre Heerlen, Heerlen, The Netherlands
  17. 17Envision Pharma Group Limited, Wilmslow, UK
  18. 18Österreichische Rheumaliga, Maria Alm, Austria
  19. 19Department of Life, Health and Environmental Sciences, University of L’Aquila, L'Aguila, Italy
  20. 20Internal Medicine and Nephrology Unit, Department of Medicine, ASL Avezzano-Sulmona-L'Aquila, San Salvatore Hospital, L'Aquila, Italy
  1. Correspondence to Dr Paul Studenic; paul.studenic{at}meduniwien.ac.at

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A range of patient-reported outcome measures (PROMs) with different features is available for people with inflammatory arthritis (IA).1–5 However, the needs and priorities of young people (aged 18–35 years) with IA regarding PROMs and their administration have never been systematically explored. Therefore, our project tackled the question whether PROMs commonly used in IA cover the perspectives and needs of young people. For this purpose, a task force (TF) guided by the 2014 EULAR Standardised Operating Procedures was convened.6 Given the limited literature on the perspectives of young people with IA regarding PROMs, a multinational focus group study7 and a subsequent online survey distributed across Europe8 replaced the conventional systematic literature review (online supplemental figure S1). The EULAR Council approved this research-based project approach. The TF was composed of 14 members from 8 European countries, with a strong representation of patient research partners. The TF met twice and, based on the results of the focus groups and survey, formulated four overarching principles (OPs), 8 points to consider (PtC) (table 1) and a research agenda (online supplemental table S1). Every TF member indicated agreement with a PtC or OP by formal voting (yes/no/abstain) during the second meeting and then anonymously scored their level of agreement (Numerical Rating Scale ranging from 0=‘no agreement’ to 10=‘absolute agreement’) after the meeting in a subsequent email round.6 OPs and PtC focused on the preferences of young patients with IA regarding the value of PROMs for shared decision making and monitoring, their content and mode of administration.

Table 1

Overarching principles and points to consider for including the perspective of young patients with IA into PROMs

These EULAR PtC provide the first guidance to optimise the use of available PROMs for young people with IA. They should also serve as a companion for clinicians and researchers in rheumatology practice, and the relevant stakeholders when developing new PROMs and modifying existing PROMs. The OPs formulated by the TF underpin the value of PROMs as key elements to assess the impact of IA on the daily life of young people with IA, to aid the shared decision-making process.9 The PtC encompass several areas such as information/education on PROMs, their purpose and the use of their results (PtC 1–3, 7), daily life activities relevant to young people (PtC 4–6) and the use of technology for health-related purposes (PtC 8). Some PtC might be applicable to young patients and to patients aged above 35 years. However, despite these potential similarities, the PtC presented were developed from the needs and priorities identified by young people with IA regarding PROMs.7 Therefore, clinicians and researchers should strive to consider and embed the perspective of young people in the development of PROMS, to pave the way for a more inclusive, individualised and equal assessment of health, disease activity and well-being.

In summary, these are the first PtC for the use of PROMs in young patients with IA based on their own perspectives. We believe that the optimisation and harmonisation of PROMs used in daily practice could strengthen the relationship between patients and healthcare providers, facilitating shared decision making, and ultimately, the quality and experience of care for young people with IA.

Ethics statements

Patient consent for publication

Acknowledgments

This manuscript was reviewed and approved by all TF members and ratified by the EULAR Council. We would like to thank the focus group and survey participants for sharing their valuable perspectives. TF members are also grateful to EULAR PARE, Young PARE and EMEUNET for their support throughout the entire project.

References

Supplementary materials

  • Supplementary Data

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Footnotes

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

  • Contributors All authors contributed to the work leading to the manuscript. The manuscript was drafted by PS and AA and revised and reviewed by all authors.

  • Funding This project was funded by the European Alliance of Associations for Rheumatology (EULAR), grant number CLI100.

  • Competing interests PS, TAS, EM, IB, NC, MK, EN, WO, IP, T-CW and AA: nothing to disclose. LGc: Personal fees from AbbVie, Amgen, Biogen, Celgene, Gilead, Janssen, Lilly, Novartis, Pfizer, Samsung Bioepis, Sanofi-Aventis, and UCB; grants from Lilly, Pfizer, and Sandoz, outside the submitted work. Sofia Ramiro: consultancy and/or speaking fees from AbbVie, Eli Lilly, MSD, Novartis, Sanofi and UCB. SS: employment by Envision Pharma Group; stock options in Envision Pharma Group; consultancy and/or speaking fees from 67 Health, Ampersand Health, Envision Pharma Group, Janssen, On The Pulse Consultancy, Parexel and Sheffield Hallam University.

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

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.