(375) Assessing Infertility Literacy and Knowledge Gaps Amongst Patients with Cystic Fibrosis

Abstract

Abstract Introduction As patients with cystic fibrosis live longer into their reproductive years, fertility concerns are rising. We hypothesized that while patients with CF may be informed of the impact of their disease on their reproductive potential, they remain unaware of the promising role of assisted reproductive technology (ART) in helping them conceive biological children. Objective Employ a cross-sectional survey to understand experiences, preferences, and current concerns in the CF community around infertility education and infertility healthcare access. Methods This study was reviewed and approved as exempt status by the Institutional Review Board (IRB) exemption as non-human research. We distributed a voluntary and anonymous Qualtrics survey to CF patients and CF advocacy organizations to assess patient understanding of infertility within CF. The survey consisted of 21 questions and aimed to capture demographics, reproductive education specific to CF, preferences on infertility education, current conception practices, and any infertility treatment. Preference questions were assessed using the Likert Scale, and personal experiences questions were answered through free text. Results Forty-one respondents completed the survey (median age of 36 ± 14 years). The median age reported for learning about CF-associated infertility was 18 years. Respondents preferred that reproductive and infertility education be provided early; 43% reported the optimal age of education was younger than 18 years while 50% reported between 18-24 years. Of the respondents trying to conceive, 43% of patients have been trying to conceive for 1-3 years qualifying for infertility. Yet, the majority of those patients (69%) have not been offered semen analysis and 90% have not had previous fertility treatments. Conclusions Patients with CF are highly educated and empowered regarding the chronic treatment of their disease. Historically, issues regarding infertility and conception have been cast to the side, given the severity of other issues, such as lung function and survival. As CF patients live longer and healthier lives, they seek healthcare in other facets, including reproduction and infertility. The findings in our study highlight the importance of discussing reproduction and its limitation in CF at a young age to preemptively empower and prepare patients and their future partners. Furthermore, our study demonstrates a strong need to strengthen the communication between CF care teams and fertility specialists. Both men and women with CF would benefit from receiving respective guidance from embryologists and andrologists to maximize their chances of conception. Disclosure Yes, this is sponsored by industry/sponsor: Cystic Fibrosis Foundation. Clarification: No industry support in study design or execution.