Reproductive Health Goals and Experiences of Women With Cystic Fibrosis [24J

Abstract

INTRODUCTION: Treatment and management advances are allowing women with many chronic diseases, such as cystic fibrosis (CF), to live longer, healthier lives. As survival improves, addressing women’s sexual and reproductive health (SRH) is increasingly important. This study examines the reproductive goals and experiences of women with CF to inform the development of a disease-specific, patient-centered decision aid (DA) around SRH. METHODS: Adult women with CF participated in individual, semi-structured interviews exploring their experiences and attitudes toward parenthood, pregnancy, contraception, and SRH care provision. Interviews were audio-recorded and transcribed verbatim. Qualitative analysis was conducted using a thematic analysis approach. IRB approval was obtained (#STUDY19040336). RESULTS: To date, 20 women with CF (age 20-63 years) have been interviewed. Emerging themes include: 1) CF team as a de facto primary care provider and related gaps in SRH care provision; 2) Lack of shared language between patients and providers related to SRH care; 3) Impact of CF on the ability to parent; 4) SRH has low priority or is perceived as unconnected to standard CF care; 5) An evidence-based reproductive goals DA would facilitate shared SRH decision-making with CF care teams. CONCLUSION: Women with CF often experience disjointed SRH care and would benefit from the development of a DA that supports them in recognizing and realizing their reproductive goals. Results from this work can serve as a model for the development of interventions that improve patient-centered SRH decision-making, especially for women with other chronic diseases who may face similar challenges and concerns.