患有囊性纤维化男性的生育及组建家庭经历与观点
Fertility and family-building experiences and perspectives of males with cystic fibrosis.
作者信息
Jathal Ishaan, Stransky Olivia M, Wright Catherine E, Prangley Asher, Tangpricha Vin, Jain Raksha, Taylor-Cousar Jennifer L, Hughan Kara S, Ladores-Barrett Sigrid, West Natalie E, Sawicki Gregory S, Kazmerski Traci M
机构信息
Department of Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA.
University of Washington School of Public Health, Seattle, WA, USA.
出版信息
Reprod Biol Endocrinol. 2025 Jun 2;23(1):85. doi: 10.1186/s12958-025-01417-9.
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.
CLINICAL TRIAL NUMBER
Not applicable.
背景
几乎所有患有囊性纤维化的男性（MwCF）都不育，因此需要使用辅助生殖技术（ART）来生育亲生孩子。本研究旨在描述该人群的生育和组建家庭的知识、经历及医疗服务利用情况，并将这些结果与美国普通人群进行比较。
方法
我们进行了一项匿名横断面研究，将自我报告的调查数据与2017 - 2019年美国全国家庭生育调查（NSFG）的数据进行比较。我们在美国的七个囊性纤维化（CF）中心招募了15岁及以上的MwCF。
结果
共有532名MwCF（平均年龄35.3±11.6岁）完成了调查。83%的人知道几乎所有MwCF都不育，84%的人意识到MwCF可以生育亲生孩子。71%的人正确识别出男性CF不育的最常见原因。三分之一的MwCF表示从未有人告诉他们因CF而不育（讨论不育问题的平均年龄为19.3±8.8岁）。31%的人报告已为人父母。在为人父母者中，66%是伴侣怀孕所生亲生孩子的父母，20%是继父母，15%是通过收养，4.3%是通过代孕，0.6%是寄养父母。与NSFG中44%的男性相比，15 - 49岁的MwCF中有18%报告是伴侣怀孕所生亲生孩子的父母（p<0.001）。在所有MwCF中，82%有亲生孩子的人报告他们需要医疗援助。在15 - 49岁的人群中，有亲生孩子的MwCF中有87%需要医疗援助，而NSFG男性中这一比例为9.4%（p<0.001）。近四分之三（73%）是亲生孩子父母的MwCF通过多种提取技术进行了精子采集。使用ART的人中91%进行了体外受精，9%对伴侣进行了宫内人工授精。
结论
MwCF面临与疾病相关的重大生育和组建家庭问题，且咨询服务欠佳。大多数身为父母的MwCF通过各种ART服务追求亲生孩子，但三分之一的人选择了其他成为父母的途径。需要进一步研究以更好地理解和支持MwCF组建家庭。
临床试验编号
不适用。
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