Understanding the Role of Parenthood and Reproduction in Women’s Preferences for Disease Modifying Treatments for Relapsing Multiple Sclerosis
Dr Ana Manzano (School of Sociology & Social Policy) and Dr Ieva Eskyte (School of Law)
Rm 12.39 Social Sciences Building
3-4pm 30th January 2019
MS is the most common cause of neurological disability in young adults in the UK normally affecting working age populations who are more likely to be women (3:1). In the last decade there has been a fast increase in the number of Disease Modifying Treatments (DMTs) available to people with relapsing multiple sclerosis. There is, however, a knowledge gap regarding when people prefer to start treatment after diagnosis, and why some people decide to delay it. Despite this young female prevalence, pregnancy has been identified as one of the neglected research areas in MS and only one of the 13 treatments currently available for relapsing MS can be safely taken in pregnancy. This presentation will explore how women with MS make decisions about when to start treatment after diagnosis, and why they may decide to delay it. It will present findings from a two year study that conducted a:
1) Critical interpretative synthesis of the literature to generate a conceptual framework to set out the underlying context in which treatment decisions takes place
2) Stakeholder focus groups (n=17) with people with MS, neurologists and MS nurses to explore preferences about DMTs and their benefits and risks and establish sampling strategy.
3) Semi-structured qualitative interviews (n=30) with women (n=22) and men (n=8) with MS to understand the main factors that discourage and encourage people to start, switch and stop DMTs; why this is the case and how these factors relate to attributes of treatments.
This working paper will focus on one of the ten interrelated attributes of treatments identified in the analysis: parenthood and reproduction.
Image Credit: Neil Tinning Free to use with attribution for non-commercial purposes https://wellcomecollection.org/works/d26xn9fn