{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,21]],"date-time":"2026-09-21T03:48:27Z","timestamp":1789962507280,"version":"4.0.1"},"reference-count":30,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2025,6,5]],"date-time":"2025-06-05T00:00:00Z","timestamp":1749081600000},"content-version":"vor","delay-in-days":4,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2025,6]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Primary ciliary dyskinesia (PCD) affects fertility in both females and males. To understand the impact and concerns among people with PCD and parents of affected children (family caregivers), we explored how they report their experiences with fertility.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      We used qualitative data from a questionnaire on fertility from\n                      <jats:italic>Living with PCD<\/jats:italic>\n                      , an international participatory study. In optional open\u2010ended comment fields, participants shared their thoughts and experiences related to fertility. We adopted conventional content analysis and analysed the data inductively.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Out of 384 survey respondents, 206 (54%) provided free\u2010text comments that we included in this analysis. We identified five categories illustrating participants' experiences with fertility: (1) challenging experiences of fertility care, ranging from insufficient fertility evidence to poor care from treating physicians, leading to an overall perception of inadequate care related to fertility; (2) PCD\u2010related reproductive concerns, such as pregnancy risks, heritability of PCD and delayed PCD diagnosis; (3) non\u2010PCD\u2010related factors complicating fertility, such as challenges in accessing fertility treatment, age as a limiting factor for fertility and other diseases affecting fertility; (4) psychological impact of infertility, marked by emotional distress, grief and coping strategies; and (5) family caregivers as gatekeepers of fertility information, reflecting their role in managing, delaying, or shaping how and when children learn about fertility.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>We need enhanced support and standardised reproductive counselling and healthcare for people with PCD to enable informed decisions on fertility and to reduce the fertility\u2010related concerns and psychological impact faced by many.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patient or Public Contribution<\/jats:title>\n                    <jats:p>This participatory study was co\u2010designed with people with PCD and a patient advisory group. Patients actively shaped research priorities, contributed to study design and questionnaire development, and played a key role in data interpretation and dissemination.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.70316","type":"journal-article","created":{"date-parts":[[2025,6,5]],"date-time":"2025-06-05T05:55:42Z","timestamp":1749102942000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["\u2018Nobody Has Ever Spoken to Me About PCD and Fertility Issues\u2019: Fertility Experiences of People With Primary Ciliary Dyskinesia and Their Family Caregivers"],"prefix":"10.1111","volume":"28","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":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3334-9204","authenticated-orcid":false,"given":"Sophie","family":"Meyer","sequence":"additional","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":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0293-9954","authenticated-orcid":false,"given":"Eva S. L.","family":"Pedersen","sequence":"additional","affiliation":[{"name":"Institute of Social and Preventive Medicine University of Bern Bern Switzerland"},{"name":"Department of Clinical Research University of Bern Bern Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2380-834X","authenticated-orcid":false,"given":"Yin Ting","family":"Lam","sequence":"additional","affiliation":[{"name":"Institute of Social and Preventive Medicine University of Bern Bern Switzerland"},{"name":"Department of Respiratory Medicine University Children's Hospital Zurich Zurich Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hansruedi","family":"Silberschmidt","sequence":"additional","affiliation":[{"name":"Verein Kartagener Syndrom und Primaere Ciliaere Dyskinesie Deutschland Wetzikon Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sara","family":"Bellu","sequence":"additional","affiliation":[{"name":"Associazione Italiana Discinesia Ciliare Primaria Sindrome di Kartagener Onlus Bari Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"Living with PCD patient advisory group","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0918-9722","authenticated-orcid":false,"given":"Sof\u00eda C.","family":"Zambrano","sequence":"additional","affiliation":[{"name":"Institute of Social and Preventive Medicine University of Bern Bern Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8957-2002","authenticated-orcid":false,"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":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8036-2092","authenticated-orcid":false,"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":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,6,5]]},"reference":[{"key":"e_1_2_13_2_1","doi-asserted-by":"publisher","DOI":"10.1183\/09031936.00216214"},{"key":"e_1_2_13_3_1","doi-asserted-by":"publisher","DOI":"10.1093\/hropen\/hoae039"},{"key":"e_1_2_13_4_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00018-019-03389-7"},{"key":"e_1_2_13_5_1","doi-asserted-by":"publisher","DOI":"10.1093\/humupd\/dmad003"},{"key":"e_1_2_13_6_1","doi-asserted-by":"publisher","DOI":"10.1530\/REP-23-0173"},{"key":"e_1_2_13_7_1","doi-asserted-by":"publisher","DOI":"10.1093\/humrep\/dev227"},{"key":"e_1_2_13_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.26743"},{"key":"e_1_2_13_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bpobgyn.2006.12.003"},{"key":"e_1_2_13_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1467-9566.2009.01213.x"},{"key":"e_1_2_13_11_1","doi-asserted-by":"publisher","DOI":"10.1183\/23120541.00357-2021"},{"key":"e_1_2_13_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.srhc.2023.100879"},{"key":"e_1_2_13_13_1","first-page":"1069","article-title":"Research Priorities in Primary Ciliary Dyskinesia\u2014Patients' Perspective","volume":"66","author":"Lam Y. 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