{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,26]],"date-time":"2026-02-26T15:14:35Z","timestamp":1772118875162,"version":"3.50.1"},"reference-count":33,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2023,11,7]],"date-time":"2023-11-07T00:00:00Z","timestamp":1699315200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Pulmonology"],"published-print":{"date-parts":[[2024,2]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Participants of the COVID\u2010PCD study completed an online questionnaire addressing fertility issues. We used logistic regression to study factors associated with fertility specialist visits.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Among 384 respondents (response rate 53%), 266 were adults (median age 44 years, interquartile range [IQR]: 33\u201354, 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\u201333)\u2014a 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\u201323.6) and among people who reported fertility as important for them (OR: 5.9, 95% CI: 2.6\u201314.6) and less often by females (OR: 0.4, 95% CI: 0.2\u20130.8). 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/ppul.26743","type":"journal-article","created":{"date-parts":[[2023,11,7]],"date-time":"2023-11-07T07:17:55Z","timestamp":1699341475000},"page":"281-290","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Fertility care among people with primary ciliary dyskinesia"],"prefix":"10.1002","volume":"59","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6180-692X","authenticated-orcid":false,"given":"Leonie D.","family":"Schreck","sequence":"first","affiliation":[{"name":"Institute of Social and Preventive Medicine University of Bern Bern Switzerland"},{"name":"Graduate School for Health Sciences University of Bern Bern Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Myrofora","family":"Goutaki","sequence":"additional","affiliation":[{"name":"Institute of Social and Preventive Medicine University of Bern Bern Switzerland"},{"name":"Division of Paediatric Respiratory Medicine and Allergology, Department of Paediatrics, Inselspital University Hospital, University of Bern Bern Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Philippa","family":"J\u00f6rger","sequence":"additional","affiliation":[{"name":"Institute of Social and Preventive Medicine University of Bern Bern Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katie","family":"Dexter","sequence":"additional","affiliation":[{"name":"PCD Support UK Buckingham UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michele","family":"Manion","sequence":"additional","affiliation":[{"name":"PCD Foundation Minneapolis Minnesota USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sophie","family":"Christin\u2010Maitre","sequence":"additional","affiliation":[{"name":"Sorbonne University INSERM UMR 933 Paris France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Bernard","family":"Maitre","sequence":"additional","affiliation":[{"name":"Univ Paris Est\u2010Cr\u00e9teil, Facult\u00e9 de Sant\u00e9, INSERM, IMRB Cr\u00e9teil France"},{"name":"Pulmonary Department Centre Hospitalier Intercommunal de Cr\u00e9teil  France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"name":"COVID\u2010PCD Patient Advisory Group","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Claudia E.","family":"Kuehni","sequence":"additional","affiliation":[{"name":"Institute of Social and Preventive Medicine University of Bern Bern Switzerland"},{"name":"Division of Paediatric Respiratory Medicine and Allergology, Department of Paediatrics, Inselspital University Hospital, University of Bern Bern Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Eva S. 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