Introduction: People with primary ciliary dyskinesia (PCD) are at increased risk of fertility problems. Fertility counselling is indicated but is rarely part of routine care and there are no recommendations. We studied availability of and satisfaction with fertility counselling in people with PCD.

Method: We used data from COVID-PCD, an international participatory study. Participants completed an online questionnaire on fertility counselling. We used logistic regression to identify factors associated with visiting fertility specialists.

Results: 380 participated; 262 adults (median age 44 years, IQR 33-54; 68% female), 17 adolescents, 101 parents of children with PCD. Most (96%) agreed that people with PCD should be referred to fertility specialists. 196 (52%) had contacted health professionals about fertility, but only half of them (54%) were satisfied with information they received. Among adults, 121 (46%) had seen fertility specialists at median age 30 (IQR 27-33) after a median of 10 years since PCD diagnosis. One third were referred by non-PCD physicians (37%), one third organised referrals themselves (35%), 15% asked for referrals and 13% were referred by PCD physicians. A visit to a fertility specialist was reported more often by those who had trouble conceiving (OR 8.5, 95%CI 3.4-11.9) or who raised fertility as an important issue (OR 6.6, 95%CI 2.8-16.7), and less often by females (OR 0.4, 95%CI 0.2-0.7).

Conclusion: People with PCD have difficulty obtaining satisfactory fertility information and being referred to fertility specialists. They would welcome fertility being routinely included in PCD care and being part of evidence-based recommendations.

Funding: SNSF 320030B_192804, SLA 2021-08_Pedersen, BEAT-PCD