Fertility care among people with primary ciliary dyskinesia.

Autor: Schreck LD; Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.; Graduate School for Health Sciences, University of Bern, Bern, Switzerland., Goutaki M; Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.; Division of Paediatric Respiratory Medicine and Allergology, Department of Paediatrics, Inselspital, University Hospital, University of Bern, Bern, Switzerland., Jörger P; Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland., Dexter K; PCD Support UK, Buckingham, UK., Manion M; PCD Foundation, Minneapolis, Minnesota, USA., Christin-Maitre S; Sorbonne University, INSERM UMR 933, Paris, France., Maitre B; Univ Paris Est-Créteil, Faculté de Santé, INSERM, IMRB, Créteil, France.; Pulmonary Department, Centre Hospitalier Intercommunal de Créteil, France., Kuehni CE; Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.; Division of Paediatric Respiratory Medicine and Allergology, Department of Paediatrics, Inselspital, University Hospital, University of Bern, Bern, Switzerland., Pedersen ESL; Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
Jazyk: angličtina
Zdroj: Pediatric pulmonology [Pediatr Pulmonol] 2024 Feb; Vol. 59 (2), pp. 281-290. Date of Electronic Publication: 2023 Nov 07.
DOI: 10.1002/ppul.26743
Abstrakt: 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. Only half of 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. Only 12% were referred to fertility specialists by their PCD physician. 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.
(© 2023 Wiley Periodicals LLC.)
Databáze: MEDLINE
Externí odkaz: