Fertility care among people with primary ciliary dyskinesia.

Schreck, Leonie D; Goutaki, Myrofora; Jörger, Philippa; Dexter, Katie; Manion, Michele; Christin-Maitre, Sophie; Maitre, Bernard; Kuehni, Claudia E; Pedersen, Eva S L (2024). Fertility care among people with primary ciliary dyskinesia. Pediatric pulmonology, 59(2), pp. 281-290. Wiley 10.1002/ppul.26743

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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.

Item Type:

 Journal Article (Original Article)

Division/Institute:

 04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine
04 Faculty of Medicine > Pre-clinic Human Medicine > Institute of Social and Preventive Medicine (ISPM)
04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine > Paediatric Pneumology

Graduate School:

 Graduate School for Health Sciences (GHS)

UniBE Contributor:

 Schreck, Leonie Daria, Goutaki, Myrofora, Jörger, Philippa, Kühni, Claudia, Pedersen, Eva Sophie Lunde

Subjects:

 600 Technology > 610 Medicine & health
300 Social sciences, sociology & anthropology > 360 Social problems & social services

ISSN:

 8755-6863

Publisher:

 Wiley

Funders:

 [4] Swiss National Science Foundation ; [204] Swiss Lung Association = Lungenliga Schweiz

Language:

 English

Submitter:

 Pubmed Import

Date Deposited:

 08 Nov 2023 11:57

Last Modified:

 13 Feb 2024 10:55

Publisher DOI:

 10.1002/ppul.26743

PubMed ID:

 37933800

Additional Information:

Kuehni and Pedersen contributed equally to this work.

Uncontrolled Keywords:

 fertility primary ciliary dyskinesia rare disease

BORIS DOI:

 10.48350/188669

URI:

 https://boris.unibe.ch/id/eprint/188669

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