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Patient perspective on decisions to switch disease-modifying treatments in relapsing-remitting multiple sclerosis

Manzano, A; Eskyte, I; Ford, HL; Pavitt, SH; Potrata, B; Schmierer, K; Chataway, J; ... Bekker, HL; + view all (2020) Patient perspective on decisions to switch disease-modifying treatments in relapsing-remitting multiple sclerosis. Multiple Sclerosis and Related Disorders , 46 , Article 102507. 10.1016/j.msard.2020.102507. Green open access

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Abstract

Background: There are now large cohorts of people with relapsing-remitting multiple sclerosis (pwRRMS) who have taken several Disease-Modifying Treatments (DMTs). Studies about switching DMTs mostly focus on clinical outcomes rather than patients' decision-making. Neurologists are now required to support decisions at various times during the relapsing disease course and they do so with concerns about DMTs risks. This qualitative study investigates how pwRRMS weigh up the pros and cons of DMTs, focusing on perceptions of effectiveness and risks when new treatments are considered. / Objective: To increase understanding of people's experiences of decision-making when switching DMTs. / Methods: 30 semi-structured interviews were conducted with pwRRMS in England. 16 participants had switched DMT and their experiences were compared with those who had only taken one DMT. Interviews were analysed thematically to answer: what main factors influence people's decision-making to switch DMTs and why? / Results: Of the 16 participants with experience of switching DMT, eight had taken two or more DMTs; eight had taken three or more. Two was the DMT median. This study demonstrated that despite the term "switching" implying that similar treatments are inter-changeable, for pwRRMS taking new treatments involves different emotions, routines, risks, prognosis and communication experiences. Two meta themes identified were: 1) A distinctive, rapid and emotional decision-making process where old emotions related to MS prognosis are revisited. 2) Switching has a different impact on communication for escalation or de-escalation processes. / Conclusion: Switching DMT involves different routines, risks, prognosis and communication experiences. These decisions are emotionally difficult because of the fear about transitioning to secondary progressive MS, and DMT effectiveness uncertainty. Patient centred decision aids should include information about first and consecutive treatment decisions.

Type: Article
Title: Patient perspective on decisions to switch disease-modifying treatments in relapsing-remitting multiple sclerosis
Open access status: An open access version is available from UCL Discovery
DOI: 10.1016/j.msard.2020.102507
Publisher version: https://doi.org/10.1016/j.msard.2020.102507
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: Relapsing-remitting multiple sclerosis, Disease-modifying therapy, Communication, Therapy switch, Qualitative research, Shared decision-making
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology
URI: https://discovery.ucl.ac.uk/id/eprint/10121106
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