Fertility of people living with primary ciliary dyskinesia: Challenges and facilitators

<bold>Introduction:</bold> The fertility journey poses challenges for individuals with primary ciliary dyskinesia (PCD), for whom fertility can be impaired. However, the extent of issues and potential solutions for adequate fertility management remain understudied. We explored challenges and facilitators related to fertility for people with PCD and their families. <bold>Method</bold> We used qualitative data from a questionnaire on fertility problems and care from “Living with PCD”, an international participatory study. In optional open-ended comment fields participants shared their thoughts and experiences related to fertility. We adopted conventional content analysis and analysed the data inductively. <bold>Results:</bold> 206 people (122 females, 46 males, 34 parents, 4 adolescents) shared their experiences related to fertility, from which we identified four main challenges and one facilitator: 1) Lack of comprehensive fertility information, 2) uncertainty about own fertility status, 3) lack of adequate access to fertility care, and 4) concern about passing PCD to their own children. Lacking information particularly about female fertility was mentioned as a gap. As a facilitator, clear guidance and support from medical professionals was an empowering factor for fertility self-management. <bold>Conclusion:</bold> People with PCD face many challenges related to fertility. Lack of adequate fertility care and information leaves them uncertain about their fertility status and potential management options. We need enhanced support and standardised reproductive health care for people with PCD to enable informed decisions on fertility, as well as to reduce the fertility related concerns faced by many of them. <bold>Funding</bold> SLA 2021-08_Pedersen, BEAT-PCD