Ishaan Jathal, Olivia M Stransky, Catherine E Wright, Asher Prangley, Vin Tangpricha, Raksha Jain, Jennifer L Taylor-Cousar, Kara S Hughan, Sigrid Ladores-Barrett, Natalie E West, Gregory S Sawicki, Traci M Kazmerski
{"title":"囊性纤维化男性的生育和家庭建设经验和观点。","authors":"Ishaan Jathal, Olivia M Stransky, Catherine E Wright, Asher Prangley, Vin Tangpricha, Raksha Jain, Jennifer L Taylor-Cousar, Kara S Hughan, Sigrid Ladores-Barrett, Natalie E West, Gregory S Sawicki, Traci M Kazmerski","doi":"10.1186/s12958-025-01417-9","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Nearly all males with cystic fibrosis (MwCF) are infertile and, thus, require the use of assisted reproductive technology (ART) to have biologic children. This study aims to describe the fertility and family-building knowledge, experiences, and care utilization of this population and to compare these findings to the general United States (US) population.</p><p><strong>Methods: </strong>We conducted an anonymous cross-sectional study of self-reported survey data compared to data from the 2017-2019 US National Survey for Family Growth (NSFG). We recruited MwCF age 15 years and older at seven US cystic fibrosis (CF) centers.</p><p><strong>Results: </strong>A total of 532 MwCF (mean age 35.3 ± 11.6 years) completed the survey. 83% knew that almost all MwCF are infertile and 84% were aware that MwCF can have biological children. 71% correctly identified the most common cause of male CF infertility. One third of MwCF stated they had never been told by anyone they were infertile due to their CF (mean age of discussion 19.3 ± 8.8 years). 31% reported being a parent. Among parents, 66% were a parent to a biological child born of a partner's pregnancy, 20% via step-parenthood, 15% adoption, 4.3% surrogacy, and 0.6% foster parenthood. Compared to 44% of NSFG males, 18% of MwCF age 15-49 years reported being a parent to a biological child born of their partner's pregnancy (p < 0.001). Among all MwCF, 82% with a biological child reported that they required medical assistance. Among those age 15-49 years, 87% of MwCF with a biological child required medical assistance compared to 9.4% of NSFG males (p < 0.001). Nearly three-quarters (73%) of MwCF who were biological parents underwent sperm retrieval via a variety of extraction techniques. 91% of those utilizing ART underwent in vitro fertilization and 9% intrauterine insemination of their partner.</p><p><strong>Conclusions: </strong>MwCF face significant disease-related fertility and family-building implications with suboptimal counseling. Most MwCF who are parents pursue biological parenthood via a variety of ART services, but one-third chose alternative paths to parenthood. Further research is needed to best understand and support the family-building of MwCF.</p><p><strong>Clinical trial number: </strong>Not applicable.</p>","PeriodicalId":21011,"journal":{"name":"Reproductive Biology and Endocrinology","volume":"23 1","pages":"85"},"PeriodicalIF":4.7000,"publicationDate":"2025-06-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12128490/pdf/","citationCount":"0","resultStr":"{\"title\":\"Fertility and family-building experiences and perspectives of males with cystic fibrosis.\",\"authors\":\"Ishaan Jathal, Olivia M Stransky, Catherine E Wright, Asher Prangley, Vin Tangpricha, Raksha Jain, Jennifer L Taylor-Cousar, Kara S Hughan, Sigrid Ladores-Barrett, Natalie E West, Gregory S Sawicki, Traci M Kazmerski\",\"doi\":\"10.1186/s12958-025-01417-9\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Nearly all males with cystic fibrosis (MwCF) are infertile and, thus, require the use of assisted reproductive technology (ART) to have biologic children. This study aims to describe the fertility and family-building knowledge, experiences, and care utilization of this population and to compare these findings to the general United States (US) population.</p><p><strong>Methods: </strong>We conducted an anonymous cross-sectional study of self-reported survey data compared to data from the 2017-2019 US National Survey for Family Growth (NSFG). We recruited MwCF age 15 years and older at seven US cystic fibrosis (CF) centers.</p><p><strong>Results: </strong>A total of 532 MwCF (mean age 35.3 ± 11.6 years) completed the survey. 83% knew that almost all MwCF are infertile and 84% were aware that MwCF can have biological children. 71% correctly identified the most common cause of male CF infertility. One third of MwCF stated they had never been told by anyone they were infertile due to their CF (mean age of discussion 19.3 ± 8.8 years). 31% reported being a parent. Among parents, 66% were a parent to a biological child born of a partner's pregnancy, 20% via step-parenthood, 15% adoption, 4.3% surrogacy, and 0.6% foster parenthood. Compared to 44% of NSFG males, 18% of MwCF age 15-49 years reported being a parent to a biological child born of their partner's pregnancy (p < 0.001). Among all MwCF, 82% with a biological child reported that they required medical assistance. Among those age 15-49 years, 87% of MwCF with a biological child required medical assistance compared to 9.4% of NSFG males (p < 0.001). Nearly three-quarters (73%) of MwCF who were biological parents underwent sperm retrieval via a variety of extraction techniques. 91% of those utilizing ART underwent in vitro fertilization and 9% intrauterine insemination of their partner.</p><p><strong>Conclusions: </strong>MwCF face significant disease-related fertility and family-building implications with suboptimal counseling. Most MwCF who are parents pursue biological parenthood via a variety of ART services, but one-third chose alternative paths to parenthood. Further research is needed to best understand and support the family-building of MwCF.</p><p><strong>Clinical trial number: </strong>Not applicable.</p>\",\"PeriodicalId\":21011,\"journal\":{\"name\":\"Reproductive Biology and Endocrinology\",\"volume\":\"23 1\",\"pages\":\"85\"},\"PeriodicalIF\":4.7000,\"publicationDate\":\"2025-06-02\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12128490/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Reproductive Biology and Endocrinology\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1186/s12958-025-01417-9\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"ENDOCRINOLOGY & METABOLISM\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Reproductive Biology and Endocrinology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1186/s12958-025-01417-9","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"ENDOCRINOLOGY & METABOLISM","Score":null,"Total":0}
Fertility and family-building experiences and perspectives of males with cystic fibrosis.
Background: Nearly all males with cystic fibrosis (MwCF) are infertile and, thus, require the use of assisted reproductive technology (ART) to have biologic children. This study aims to describe the fertility and family-building knowledge, experiences, and care utilization of this population and to compare these findings to the general United States (US) population.
Methods: We conducted an anonymous cross-sectional study of self-reported survey data compared to data from the 2017-2019 US National Survey for Family Growth (NSFG). We recruited MwCF age 15 years and older at seven US cystic fibrosis (CF) centers.
Results: A total of 532 MwCF (mean age 35.3 ± 11.6 years) completed the survey. 83% knew that almost all MwCF are infertile and 84% were aware that MwCF can have biological children. 71% correctly identified the most common cause of male CF infertility. One third of MwCF stated they had never been told by anyone they were infertile due to their CF (mean age of discussion 19.3 ± 8.8 years). 31% reported being a parent. Among parents, 66% were a parent to a biological child born of a partner's pregnancy, 20% via step-parenthood, 15% adoption, 4.3% surrogacy, and 0.6% foster parenthood. Compared to 44% of NSFG males, 18% of MwCF age 15-49 years reported being a parent to a biological child born of their partner's pregnancy (p < 0.001). Among all MwCF, 82% with a biological child reported that they required medical assistance. Among those age 15-49 years, 87% of MwCF with a biological child required medical assistance compared to 9.4% of NSFG males (p < 0.001). Nearly three-quarters (73%) of MwCF who were biological parents underwent sperm retrieval via a variety of extraction techniques. 91% of those utilizing ART underwent in vitro fertilization and 9% intrauterine insemination of their partner.
Conclusions: MwCF face significant disease-related fertility and family-building implications with suboptimal counseling. Most MwCF who are parents pursue biological parenthood via a variety of ART services, but one-third chose alternative paths to parenthood. Further research is needed to best understand and support the family-building of MwCF.
期刊介绍：
Reproductive Biology and Endocrinology publishes and disseminates high-quality results from excellent research in the reproductive sciences.
The journal publishes on topics covering gametogenesis, fertilization, early embryonic development, embryo-uterus interaction, reproductive development, pregnancy, uterine biology, endocrinology of reproduction, control of reproduction, reproductive immunology, neuroendocrinology, and veterinary and human reproductive medicine, including all vertebrate species.
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