Impact of communication on first treatment decisions in people with relapsing-remitting multiple sclerosis

Ana Manzano; Ieva Eskytė; Helen L Ford; Hilary L Bekker; Barbara Potrata; Jeremy Chataway; Klaus Schmierer; George Pepper; David Meads; Edward Jd Webb; Sue H Pavitt

doi:10.1016/j.pec.2020.05.014

Impact of communication on first treatment decisions in people with relapsing-remitting multiple sclerosis

Patient Educ Couns. 2020 May 13:S0738-3991(20)30280-9. doi: 10.1016/j.pec.2020.05.014. Online ahead of print.

Authors

Ana Manzano¹, Ieva Eskytė², Helen L Ford³, Hilary L Bekker⁴, Barbara Potrata⁵, Jeremy Chataway⁶, Klaus Schmierer⁷, George Pepper⁸, David Meads⁴, Edward Jd Webb⁴, Sue H Pavitt⁹

Affiliations

¹ School of Sociology & Social Policy, Room 11.20 Social Sciences Building, University of Leeds, Leeds LS2 9JT, United Kingdom. Electronic address: a.manzano@leeds.ac.uk.
² School of Law, University of Leeds, Leeds, United Kingdom.
³ Leeds Teaching Hospitals NHS Trust, Leeds, United Kingdom.
⁴ Leeds Institute of Health Sciences, University of Leeds, Leeds, United Kingdom.
⁵ Independent Consultant, Rotterdam, the Netherlands.
⁶ Department of Neuroinflammation, UCL Institute of Neurology, University College London, London, United Kingdom.
⁷ Blizard Institute (Neuroscience), Barts and The London School of Medicine & Dentistry, Queen Mary University of London, London, United Kingdom.
⁸ Shift.ms, Leeds, United Kingdom.
⁹ School of Dentistry, University of Leeds, Leeds, United Kingdom.

PMID: 32456983
DOI: 10.1016/j.pec.2020.05.014

Abstract

Objective: Disease-Modifying Treatments (DMTs) have contributed to a new clinical landscape for people with relapsing-remitting multiple sclerosis (pwRRMS). A challenge for services is how to support DMT decisions with changing clinical evidence, and differing treatment goals. This article investigates how pwRRMS weigh up the pros and cons of DMTs by examining how communication at the point of diagnosis is related to DMT decisions.

Methods: 30 semi-structured interviews with pwRRMS in England were conducted using a theoretical purposive sampling strategy and analysed using the thematic approach to answer: How does communication about RRMS during diagnosis influence decisions about when and which DMT to choose?

Results: Three meta-themes were identified: a) communication context; b) delayed communication and hope for people with "non-active" RRMS at diagnosis; c) people with "active" RRMS at diagnosis: Conflated, generic, selective and simplified information CONCLUSION: At the time of diagnosis, patient-physician interactions are characterised by emotions and information complexity. Clinical, social and psychological DMT filtering mechanisms are activated during first decisions. Personalised evidence is needed to make informed decisions.

Practice implications: Patient decision aids should consider first and consecutive decisions and should not encourage a false sense of large choices that could add to decision anxiety.

Keywords: Diagnosis communication; Disease-modifying therapy; Multiple sclerosis; Patient perspective; Qualitative research; Relapsing-remitting multiple sclerosis; Shared decision-making; Treatment decision-making.