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Crystal arthropathies
Original research
Development of a patient decision aid for the initiation of urate-lowering therapy in gout patients
  1. Ritch te Kampe1,2,
  2. Annelies Boonen1,2,
  3. Tim Jansen3,
  4. Matthijs Janssen3,
  5. Hein de Vries2,4 and
  6. Caroline van Durme1,5
  1. 1Internal Medicine, Division of Rheumatology, Maastricht University Medical Centre+, Maastricht, Netherlands
  2. 2Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, Netherlands
  3. 3Rheumatology, VieCuri Medical Centre, Venlo, Netherlands
  4. 4Health Promotion, Maastricht University, Maastricht, Limburg, Netherlands
  5. 5Rheumatology, Centre Hospitalier Chrétien, Liege, Belgium
  1. Correspondence to Dr Ritch te Kampe; r.tekampe{at}maastrichtuniversity.nl

Abstract

Aim Shared decision-making improves patients’ experiences with care, satisfaction with management decisions and possibly health outcomes. This study describes the development of a decision aid (DA) that supports patients with gout and their physicians in a face-to-face clinical setting to (a) decide whether or not to (re)start urate-lowering therapy (ULT) and (b) agree on the preferred ULT.

Methods Recommendations of the International Patient Decision Aid Standards group guided the development. A steering group of experts in gout and health services research specified the scope. Nominal group technique meetings were organised in which patients ranked the importance of preidentified potential characteristics/attributes of ULT and discussed further needs regarding the DA. A literature search was conducted to collect evidence on gout outcomes with and without ULT. Subsequently, the DA prototype was designed and adjusted using feedback from the steering group and results of cognitive debriefing interviews among five gout patients.

Results The final DA consists of six pages. First, the DA clarifies the decision at stake and describes gout including its risk factors, the role of lifestyle and treatment of flares. Next, risk of future flares with and without ULT in relation to serum uric acid levels is described and visualised. Relevant attributes of ULT are presented in an option grid distinguishing first-line and second-line ULT. Finally, patients’ believes and preferences are explicitly addressed before making the shared decision.

Conclusion This study provides initial support for usability of a DA for gout patients eligible for starting ULT.

  • gout
  • qualitative research
  • patient reported outcome measures

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information. All data generated or analysed during this study are included in this published article and its supplementary information) files.

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-2021-001979

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    Data availability statement

    All data relevant to the study are included in the article or uploaded as supplementary information. All data generated or analysed during this study are included in this published article and its supplementary information) files.

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    Footnotes

    • Contributors RtK analyzed and interpreted the patient data regarding the usability of the decision aid. RtK, AB, and CvD contributed most to the development of the decision aid itself. The content of the decision aid was agreed upon the contribution of RtK, TJ, MJ, HdV, CvD, and AB. AB was major contributor in writing the manuscript. All authors read and approved the final manuscript.

    • Funding This work was supported by the MUMC+/VieCuri Science Funds.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally 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.