Shared Decision-Making in the Treatment of Multiple Sclerosis: Results of a Cross-Sectional, Real-World Survey in Europe and the United States

Alexander Keenan; Hoa H Le; Kavita Gandhi; Lola Adedokun; Eddie Jones; Mia Unsworth; James Pike; Emily Trenholm

doi:10.2147/PPA.S440410

Shared Decision-Making in the Treatment of Multiple Sclerosis: Results of a Cross-Sectional, Real-World Survey in Europe and the United States

Patient Prefer Adherence. 2024 Jan 16:18:137-149. doi: 10.2147/PPA.S440410. eCollection 2024.

Authors

Alexander Keenan¹, Hoa H Le¹, Kavita Gandhi², Lola Adedokun³, Eddie Jones⁴, Mia Unsworth⁴, James Pike⁵, Emily Trenholm⁴

Affiliations

¹ Scientific Affairs, Janssen Pharmaceuticals Inc., Titusville, NJ, USA.
² Research and Development, Janssen Pharmaceuticals Inc., Titusville, NJ, USA.
³ Research and Development, Janssen-Cilag Ltd, High Wycombe, UK.
⁴ Central Nervous System, Adelphi Real World, Bollington, Cheshire, UK.
⁵ Statistics & Data Analytics, Adelphi Real World, Bollington, Cheshire, UK.

Abstract

Introduction: Multiple sclerosis (MS) is a neurodegenerative disease characterized by progressive deterioration of cognitive and physical functioning, reducing activities of daily living and quality of life (QoL). Several treatments are available that modify the course of the disease and reduce the frequency of relapses. Although effective, all treatment options are accompanied by adverse events, and this study aimed to assess the extent to which patients were involved in the choice of treatment.

Methods: Data were drawn from the Adelphi Multiple Sclerosis Disease Specific Program (DSP)™, a cross-sectional survey of healthcare practitioners (HCP) and their patients with MS in real-world clinical settings in Europe and the United States (US) between December 2020 and July 2021. HCPs reported patient demographics, clinical characteristics, current and previous treatment, and treatment outcomes. Patients voluntarily completed questionnaires reporting the physical and psychological impact of their MS and its treatment. Regression analysis with inverse probability of treatment weighting was used to compare treatment outcomes in patients actively involved in their current treatment choice with those who were not.

Results: Of a total of 692 patients, median age 40 years and 64% female, mostly diagnosed with relapsing-remitting MS, those who were involved in shared decision-making tended to choose oral therapies such as dimethyl fumarate more often than HCPs. MS had greater impact on physical and psychological functioning in patients whose HCP made treatment decisions solely. Patients involved in decision-making reported greater satisfaction with their treatment and a better QoL.

Discussion: Because no single optimal therapy exists for patients with MS, treatments should be individualized with consideration of patients' preferences. Our study shows that shared decision-making is under-utilized in the management of MS and supports the benefits of patient involvement.

Conclusion: Patients who have an active role in treatment decision-making show improved wellbeing and QoL, and overall treatment satisfaction.

Keywords: decision-making; multinational; multiple sclerosis; patient preference; shared; survey.

Grants and funding

Janssen Pharmaceuticals Inc. did not influence the original survey through either contribution to the design of questionnaires or data collection. The analysis described here used data from the Adelphi Real World MS DSP. The DSP is a wholly owned Adelphi Real World product. Janssen Pharmaceuticals Inc. is one of multiple subscribers to the DSP. Publication of survey results was not contingent on the subscriber’s approval or censorship of the manuscript.