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Rheumatoid arthritis
Original research
What do patients prefer? A multinational, longitudinal, qualitative study on patient-preferred treatment outcomes in early rheumatoid arthritis
  1. Kristien Van der Elst1,
  2. Elke G E Mathijssen2,
  3. Ellen Landgren3,4,
  4. Ann Bremander3,5,
  5. An De Groef6,7,
  6. Elisabet Lindqvist3,4,
  7. Maria Nylander8,9,
  8. Alma Peters10,11,
  9. Frank Van den Hoogen2,
  10. Yvonne van Eijk-Hustings12,13,
  11. Gerard Verhoeven2,11,
  12. Johanna E Vriezekolk2,
  13. Rene Westhovens1,14 and
  14. Ingrid Larsson8,15
  1. 1Department of Rheumatology, University Hospitals Leuven, Leuven, Belgium
  2. 2Department of Rheumatology, Sint Maartenskliniek Nijmegen, Nijmegen, Netherlands
  3. 3Department of Clinical Sciences, Section of Rheumatology, Lund University, Lund, Sweden
  4. 4Department of Rheumatology, Skåne University Hospital, Lund, Sweden
  5. 5Department of Regional Health Research, University of Southern Denmark, Odense, Denmark
  6. 6Department of Rehabilitation Sciences, KU Leuven, Leuven, Belgium
  7. 7Patient Research Partner, KU Leuven University Hospitals Leuven, Leuven, Belgium
  8. 8Spenshult Research and Development Centre, Halmstad, Sweden
  9. 9Patient Research Partner, Swedish Rheumatism Association, Stockholm, Sweden
  10. 10Department of Rheumatology, Sint Maartenskliniek, Nijmegen, Netherlands
  11. 11Patient Research Partner, Sint Maartenskliniek, Nijmegen, Netherlands
  12. 12Department of Rheumatology, Maastricht University Medical Centre, Maastricht, Netherlands
  13. 13Department of Clinical Epidemiology and Medical Technology Assessment, Maastricht University Medical Centre, Maastricht, Netherlands
  14. 14Department of Development and Regeneration, Skeletal Biology and Engineering Research Centre, KU Leuven, Leuven, Belgium
  15. 15School of Health and Welfare, Halmstad University, Halmstad, Sweden
  1. Correspondence to Ingrid Larsson; ingrid.larsson{at}hh.se

Abstract

Objectives To explore treatment outcomes preferred by patients with early rheumatoid arthritis (RA) and how these change throughout the early disease stage across three European countries.

Methods A longitudinal, qualitative, multicentre study was conducted in Belgium, the Netherlands and Sweden. 80 patients with early RA were individually interviewed 3–9 months after treatment initiation and 51 of them participated again in either a focus group or an individual interview 12–21 months after treatment initiation. Data were first analysed by country, following the Qualitative Analysis Guide of Leuven (QUAGOL). Thereafter, a meta-synthesis, inspired by the principles of meta-ethnography and the QUAGOL, was performed, involving the local research teams.

Results The meta-synthesis revealed 11 subthemes from which four main themes were identified: disease control, physical performance, self-accomplishment and well-being. ‘A normal life despite RA’ was an overarching patient-preferred outcome across countries. Belgian, Dutch and Swedish patients showed many similarities in terms of which outcomes they preferred throughout the early stage of RA. Some outcome preferences (eg, relief of fatigue and no side effects) developed differently over time across countries.

Conclusions This study on patient-preferred outcomes in early RA revealed that patients essentially want to live a normal life despite RA. Our findings help to understand what really matters to patients and provide specific insights into the early stage of RA, which should be addressed by clinicians of different disciplines from the start of treatment onwards.

  • Arthritis
  • Rheumatoid
  • Outcome and Process Assessment
  • Health Care
  • Qualitative research
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/

https://doi.org/10.1136/rmdopen-2020-001339

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    Footnotes

    • KVdE and EGEM share the first authorship.

    • Contributors All authors were involved in drafting the article or revising it critically for important intellectual content and all authors approved the final version to be submitted for publication. Study conception and design: KVdE, EGEM, AB, ADG, YvE-H, JEV, RW and IL. Acquisition of data: KVdE, SM, EGEM, JEV, EL and IL. Analysis and interpretation of data: KVdE, EGEM, EL, AB, ADG, EL, MN, AP, FVdH, YvE-H, GV, JEV, RW and IL.

    • Funding This work was supported by an unrestricted educational grant of Bristol-Myers Squibb (Belgium), a travel grant from Fonds voor Wetenschappelijk Reuma Onderzoek (Fund for Scientific Research in Rheumatology) (Belgium), the Southern Healthcare Region (Sweden) and the Swedish Rheumatism Association (Sweden).

    • Competing interests None declared.

    • Patient consent for publication All patients who participated in this study provided written informed consent.

    • Ethics approval Ethical approval was sought from the local ethical review boards in each country.

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

    • Data availability statement The data supporting the results reported in the manuscript will not be shared as ethical approval for the study requires that the transcribed interviews are kept in locked files, accessible only to the researchers.

    • 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.