'Nobody Has Ever Spoken to Me About PCD and Fertility Issues': Fertility Experiences of People With Primary Ciliary Dyskinesia and Their Family Caregivers.

BACKGROUND

Primary ciliary dyskinesia (PCD) affects fertility in both females and males. To understand the impact and concerns among people with PCD and parents of affected children (family caregivers), we explored how they report their experiences with fertility.

METHODS

We used qualitative data from a questionnaire on fertility 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.

RESULTS

Out of 384 survey respondents, 206 (54%) provided free-text comments that we included in this analysis. We identified five categories illustrating participants' experiences with fertility: (1) challenging experiences of fertility care, ranging from insufficient fertility evidence to poor care from treating physicians, leading to an overall perception of inadequate care related to fertility; (2) PCD-related reproductive concerns, such as pregnancy risks, heritability of PCD and delayed PCD diagnosis; (3) non-PCD-related factors complicating fertility, such as challenges in accessing fertility treatment, age as a limiting factor for fertility and other diseases affecting fertility; (4) psychological impact of infertility, marked by emotional distress, grief and coping strategies; and (5) family caregivers as gatekeepers of fertility information, reflecting their role in managing, delaying, or shaping how and when children learn about fertility.

CONCLUSION

We need enhanced support and standardised reproductive counselling and healthcare for people with PCD to enable informed decisions on fertility and to reduce the fertility-related concerns and psychological impact faced by many.

PATIENT OR PUBLIC CONTRIBUTION

This participatory study was co-designed with people with PCD and a patient advisory group. Patients actively shaped research priorities, contributed to study design and questionnaire development, and played a key role in data interpretation and dissemination.