Family planning and MS: Understanding information needs

25 July 2023

  • As the diagnosis of MS typically coincides with peak reproductive years, family planning for both males and females living with MS is of utmost importance.
  • Modern-day disease modifying therapies (DMTs) present unique challenges for people with MS, as some therapies have potential safety concerns for those planning a pregnancy or those currently pregnant.
  • Study findings show many opportunities to improve conversations about family planning between people with MS and their healthcare professionals (HCPs).

Although we have made great strides in our knowledge of pregnancy and MS, there is still uncertainty about the impact of MS and pregnancy in specific areas, such as some of the newer DMTs and both female and male fertility.

This qualitative research study, led by Anna Fragkoudi from the University of Adelaide and published in Patient Education and Counseling, aimed to explore the experiences of people living with MS regarding family planning, with a focus on understanding what their information needs are and where the opportunities might be for improving informed decision-making with their HCPs.

What did the study investigators do?

The study team used targeted questions about pregnancy, fertility and family planning in semi-structured interviews with 22 people living with MS (19 females and three males) who were all of reproductive age.

Participants were living in Australia and were spread across different types of MS, some already had started families, and some were pregnant at the time of the interview.

The researchers then analysed the interview transcripts using thematic analysis to determine key themes and insights to help us understand what people with MS need to better manage family planning and to ensure sound, informed decision-making.

What did the study results show?

Findings from the study revealed four overarching themes involving family planning that came up repeatedly for people with MS. These included:

  • Reproductive planning — this involved issues around discussing the intention to fall pregnant (and inconsistencies from the HCPs around approaching this) and how involved people felt in their own reproductive decision-making and management.
  • Reproductive concerns — about the impact of MS and coping as a parent, the possibility of passing MS onto their own children, the effects of the DMTs and possible disease progression during pregnancy.
  • Information awareness and accessibility — including limited access to information and resources and conflicting information about family planning issues.
  • Trust and emotional support — with the need for continuity of care and consistency, as well as peer support groups from MS organisations and social media being highly valued.

Overall, the study revealed that people with MS wanted consistent engagement with HCPs regarding family planning, particularly around discussions of the intent to fall pregnant.

The study also highlighted that people with MS desired improvements in the quality, and access, of resources and supports to address reproductive concerns.

How does this study help our understanding of family planning needs in MS?

Lead researcher, Anna Fragkoudi, explains that HCPs are often faced with barriers around discussing family planning with their patients, including clinic time limitations and important safety care that is part of modern-day DMT management.

However, as Anna says, “HCPs need to listen to their patients and their needs. Whilst research into a cure is a main focus in MS research, we can’t neglect what people with MS want and need. A key finding from this study is that people with MS really want to engage consistently with their HCPs about family planning issues”.

The next steps for the research team include a study exploring the perspectives of Australian MS neurologists and MS Nurses in family planning clinical advice so that a more rounded understanding of barriers and potential ways to overcome them can help address the unmet needs of people with MS, and their reproductive management.


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Family planning and MS: Understanding information needs