Medication Choice and Management Decision Making Considering Family Planning for Women Living with Multiple Sclerosis.

Abstract

Background Multiple sclerosis (MS) is a chronic inflammatory demyelinating and neurodegenerative disorder that affects women more than men. Most women are diagnosed during their childbearing years when they have not yet completed their family. Starting disease modifying drugs (DMDs) is vital in some MS cases to control the disease and prevent further disability. Choosing whether to start treatment or to complete their family first, or choosing to continue, stop, or switch treatment to conceive are all tricky decisions for both healthcare providers and women with MS. This difficulty arises from the novelty and management complexity of DMDs, not to mention the personal circumstances of patients which need to be taken into consideration in order to eventually reach a shared decision. Aim To explore and understand the holistic decision-making experience of treatment choices and family planning for women living with MS, to facilitate an improvement in the quality of the processes and decisions involved. Objectives 1. To identify the available literature on the effects of switching and managing treatment to allow for pregnancy in women with MS. 2. To explore the real-life experiences of women with MS when choosing, switching, or managing medications, and how they arrange their family plans accordingly. 3. To explore the experiences of key healthcare providers (HCPs) who support these women in such decisions. 4. To identify available resources to help women with these decisions. 7 5. To explore what women needs to see in decision tools to help them with decisions through evaluation of an available online decision aid. Methods The methods were selected to match the objectives: Objective 1 was addressed via a systematic review; Objectives 2, 3, and 4 were reached through qualitative interviews with women with MS and their HCPs (consultants, nurses, and pharmacists); and Objective 5 was attained through qualitative Think Aloud sessions with women with MS. Results The systemic review showed the scarcity of published research focusing on medication decision-making when planning pregnancy, as well as its effect on a woman’s MS. The interview studies showed that despite the importance of this area, it still needs more attention and standardisation of services to create a better care experience. The lack of all kinds of resources (time, information, human) for this for both women and their HCPs is also a challenge. The interviews highlighted the importance of the timing of decisions and patient readiness to decide, which has been found to be regularly compromised by the biographical disruption caused by illness. The Think Aloud sessions collected very useful ideas from its primary users to amend the online MS Trust tool. This serves as an important outcome/output of this thesis. Conclusion This thesis sheds light on medication management as it intersects with family planning decisions, and addresses the need for service standardisation, more patient-friendly information resources, the consideration of patient readiness to make decisions, and