Fertility Preservation in Women with Cystic Fibrosis Pre-Lung Transplantation

囊性纤维化妇女肺移植术前生育力的保留 项目总结/摘要 这项探索性研究将检查目前的状态生育保留（FP）咨询的妇女， 囊性纤维化（CF）从3 P（患者，合作伙伴和提供者）的角度来看，目标是确定 临床实践中的差距、障碍和促进因素，以便为CF女性制定FP指南， 扩大她们的生殖选择，改善她们的生殖健康成果。本研究的目的是：（1） 探讨CF妇女与FP相关的知识、经验、偏好和关切， 肺移植前的生殖选择;（2）探索知识，经验，偏好， CF女性的伴侣在肺移植前对FP作为生殖选择的担忧;以及 (3)探讨CF提供者对CF妇女FP咨询的知识、实践和态度 在肺移植之前。 随着早期诊断和管理的进步，CF不再被认为是儿童疾病， 患有CF的人活到成年，平均生存年龄为45岁左右。CF的一半 人口中的大多数是妇女，其中许多人希望参与所有发展里程碑，包括成为母亲。 对于正在接受肺移植评估的患有严重肺部疾病的女性子集， 发表的关于CF提供者是否与他们讨论FP的研究。虽然FP咨询是 在接受放疗和/或化疗的肿瘤人群中， 非恶性肿瘤患者的临床指南。 采用混合方法设计，将进行横断面调查，以检查计划生育知识， 成人患者（n=50）及其伴侣（n=30）的经验偏好和担忧，以及FP知识， 实践和CF提供者的态度（n=50）。与患者子集（n= 20）、合作伙伴的访谈 （n=20）和CF提供者（n=20）进行，以补充定量结果， 了解肺移植前CF女性及其伴侣的FP咨询现状。 研究结果将为制定临床指南和新的生殖保健模式提供信息。 人口，并指导未来的研究，包括男性CF，他们的合作伙伴，和其他卫生保健提供者 例如移植、产科和生育专家。

Fertility Preservation in Women with Cystic Fibrosis Pre-Lung Transplantation Project Summary/Abstract This exploratory study will examine the current state of fertility preservation (FP) counseling for women with cystic fibrosis (CF) from the perspectives of the 3Ps (Patient, Partner, and Provider) with the goal of identifying the gaps, barriers, and facilitators in clinical practice in order to develop FP guidelines for women with CF, broaden their reproductive options, and improve their reproductive health outcomes. This study aims to: (1) explore the knowledge, experiences, preferences, and concerns of women with CF related to FP as a reproductive option prior to lung transplantation; (2) explore the knowledge, experiences, preferences, and concerns of partners of women with CF related to FP as a reproductive option prior to lung transplantation; and (3) explore the knowledge, practices, and attitudes of CF providers related to FP counseling in women with CF prior to lung transplantation. With advances in early diagnosis and management, CF is no longer considered a disease of childhood, and people with CF are living into adulthood, with the average survival age of the mid-40s. Half of the CF population are women, many of whom want to engage in all developmental milestones, including motherhood. For the subset of women with severe lung disease who are being evaluated for a lung transplant, there are no published studies on whether CF providers discuss FP with them. While FP counseling is part of comprehensive care in the oncology population undergoing radiation and/or chemotherapy, there are no clinical guidelines for those with non-malignant conditions. Using a mixed methods design, a cross-sectional survey will be administered to examine the FP knowledge, experiences preferences, and concerns of adult Patients (n=50) and their Partners (n=30), and FP knowledge, practices, and attitudes of CF Providers (n=50). An interview with a subset of Patients (n= 20), Partners (n=20), and CF Providers (n=20) will be conducted to supplement the quantitative results and more fully understand the current state of FP counseling for women with CF and their partners pre-lung transplantation. Findings will inform the development of clinical guidelines and new models for reproductive health care for this population, and guide future studies that include men with CF, their partners, and other health care providers such as transplant, obstetrical, and fertility specialists.