Fertility care among people with primary ciliary dyskinesia

Introduction Fertility care is important for people living with primary ciliary dyskinesia (PCD) who are at increased risk of fertility problems. We investigated fertility care in an international participatory study. Methods Participants of the COVID-PCD study completed an online questionnaire addressing fertility issues. We used logistic regression to study factors associated with fertility specialist visits. Results Among 384 respondents (response rate 53%), 266 were adults [median age 44 years, interquartile range (IQR) 33–54), 68% female], 16 adolescents, and 102 parents of children with PCD. Half adult participants (128; 48%) received care from fertility specialists at a median age of 30 years (IQR 27–33)—a median of 10 years after PCD diagnosis. Fertility specialist visits were reported more often by adults with pregnancy attempts [odds ratio (OR) 9.1, 95% confidence interval (CI) 3.8–23.6] and among people who reported fertility as important for them (OR 5.9, 95% CI 2.6–14.6) and less often by females (OR 0.4, 95% CI 0.2–0.8). Only 56% of participants who talked with healthcare professionals about fertility were satisfied with information they received. They expressed needs for more comprehensive fertility information and reported dissatisfaction with physician knowledge about PCD and fertility. Conclusion People with PCD are inconsistently referred to fertility specialists. We recommend care from fertility specialists become standard in routine PCD care, and that PCD physicians provide initial fertility information either at diagnosis or no later than transition to adult care.