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Individual Differences in the Patient Experience of Relapsing Multiple Sclerosis (RMS): A Multi-Country Qualitative Exploration of Drivers of Treatment Preferences Among People Living with RMS

Author

Listed:
  • Sophi Tatlock

    (Adelphi Values)

  • Kate Sully

    (Adelphi Values)

  • Anjali Batish

    (Adelphi Values)

  • Chelsea Finbow

    (Adelphi Values)

  • William Neill

    (Adelphi Values)

  • Carol Lines

    (Novartis Pharma AG)

  • Roisin Brennan

    (Novartis Pharma AG)

  • Nicholas Adlard

    (Novartis Pharma AG)

  • Tamara Backhouse

    (University of East Anglia)

Abstract

Aims The aim of this study was to explore the experiences, values and preferences of people living with relapsing multiple sclerosis (PLwRMS) focusing on their treatments and what drives their treatment preferences. Methods In-depth, semi-structured, qualitative telephone interviews were conducted using a purposive sampling approach with 72 PLwRMS and 12 health care professionals (HCPs, MS specialist neurologists and nurses) from the United Kingdom, United States, Australia and Canada. Concept elicitation questioning was used to elicit PLwRMS’ attitudes, beliefs and preferences towards features of disease-modifying treatments. Interviews with HCPs were conducted to inform on HCPs’ experiences of treating PLwRMS. Responses were audio recorded and transcribed verbatim and then subjected to thematic analysis. Results Participants discussed numerous concepts that were important to them when making treatment decisions. Levels of importance participants placed on each concept, as well as reasons underpinning importance, varied substantially. The concepts with the greatest variability in terms of how much PLwRMS found them to be important in their decision-making process were mode of administration, speed of treatment effect, impact on reproduction and parenthood, impact on work and social life, patient engagement in decision making, and cost of treatment to the participant. Findings also demonstrated high variability in what participants described as their ideal treatment and the most important features a treatment should have. HCP findings provided clinical context for the treatment decision-making process and supported patient findings. Conclusions Building upon previous stated preference research, this study highlighted the importance of qualitative research in understanding what drives patient preferences. Characterized by the heterogeneity of the RMS patient experience, findings indicate the nature of treatment decisions in RMS to be highly individualized, and the subjective relative importance placed on different treatment factors by PLwRMS to vary. Such qualitative patient preference evidence could offer valuable and supplementary insights, alongside quantitative data, to inform decision making related to RMS treatment.

Suggested Citation

  • Sophi Tatlock & Kate Sully & Anjali Batish & Chelsea Finbow & William Neill & Carol Lines & Roisin Brennan & Nicholas Adlard & Tamara Backhouse, 2023. "Individual Differences in the Patient Experience of Relapsing Multiple Sclerosis (RMS): A Multi-Country Qualitative Exploration of Drivers of Treatment Preferences Among People Living with RMS," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 16(4), pages 345-357, July.
  • Handle: RePEc:spr:patien:v:16:y:2023:i:4:d:10.1007_s40271-023-00617-y
    DOI: 10.1007/s40271-023-00617-y
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    References listed on IDEAS

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    1. Jacoline C. Bouvy & Luke Cowie & Rosemary Lovett & Deborah Morrison & Heidi Livingstone & Nick Crabb, 2020. "Use of Patient Preference Studies in HTA Decision Making: A NICE Perspective," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 13(2), pages 145-149, April.
    2. Edward J. D. Webb & David Meads & Ieva Eskyte & Natalie King & Naila Dracup & Jeremy Chataway & Helen L. Ford & Joachim Marti & Sue H. Pavitt & Klaus Schmierer & Ana Manzano, 2018. "A Systematic Review of Discrete-Choice Experiments and Conjoint Analysis Studies in People with Multiple Sclerosis," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 11(4), pages 391-402, August.
    3. Dana L. Alden & John Friend & Ping Yein Lee & Yew Kong Lee & Lyndal Trevena & Chirk Jenn Ng & Sorapop Kiatpongsan & Khatijah Lim Abdullah & Miho Tanaka & Supanida Limpongsanurak, 2018. "Who Decides: Me or We? Family Involvement in Medical Decision Making in Eastern and Western Countries," Medical Decision Making, , vol. 38(1), pages 14-25, January.
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