Perspectives of adolescent girls with cystic fibrosis and parents on disease-specific sexual and reproductive health education

Introduction: Adolescent girls with cystic fibrosis (CF) face significant disease-specific sexual and reproductive health (SRH) concerns that are not typically addressed in routine clinical care. Additionally, there is a paucity of developmentally appropriate CF-specific SRH educational resources for this population. The goal of this study was to explore patient and parent attitudes toward SRH educational resources for adolescent girls with CF.

Methods: Adolescent girls ages 13-18 years with CF and parents of daughters ages 10-18 years with CF completed individual, semi-structured interviews regarding their experiences and preferences around CF-specific SRH education and care. To facilitate discussion, participants provided feedback on the format and design of existing SRH educational resources. Qualitative analysis was conducted using a thematic analysis approach.

Results: We interviewed 26 participants (14 parents and 12 patients). The majority reported they had never discussed SRH in the CF care setting. All participants preferred a comprehensive, online patient educational resource complemented by real patient stories and interactive components. Participants noted that such resources should create a sense of normalcy and community around CF and female SRH. Most desired more frequent communication around SRH between adolescent girls with CF and their healthcare providers as a way to promote SRH knowledge, decision making, and health outcomes.

Discussion: Adolescent girls with CF and their parents desire an online patient educational resource that normalizes SRH and enhances patient-provider communication around these topics. Creation of developmentally appropriate resources would facilitate improved health outcomes around this aspect of comprehensive care in CF.