Family planning and multiple sclerosis: A qualitative study of patient experiences to understand information needs and promote informed decision-making

Abstract

Objectives: Ambiguity exists about the impact of multiple sclerosis (MS) on fertility and pregnancy. We explored female and male patients’ experiences with MS regarding family planning to understand information needs and opportunities to improve informed decision-making. Methods: Semi-structured interviews were conducted with Australian female (n = 19) and male (n = 3) patients of reproductive age diagnosed with MS. Transcripts were analysed thematically, adopting a phenomenological approach. Results: Four main themes emerged: ‘reproductive planning’, revealing inconsistent experiences about pregnancy intention discussions with health care professionals (HCPs), and involvement in decisions about MS management and pregnancy; ‘reproductive concerns’, about the impact of the disease and its management; ‘information awareness and accessibility’, with participants generally reporting they had limited access to desired information and received conflicting information about family planning; and ‘trust and emotional support’, with continuity of care and engagement with peer-support groups about family planning needs valued. Conclusion: Patients with MS want consistent engagement with HCPs regarding discussion of pregnancy intent and desire improvements in quality and accessibility of available resources and support services to address reproductive concerns. Practice implications: Family planning conversations should be a part of routine care planning for MS patients and contemporary resources are required to support these discussions.