Sexual and Reproductive Health Education for Adolescents with Cystic Fibrosis

Background: A cystic fibrosis (CF) center in the Intermountain West identified a gap in care with no standard sexual and reproductive health (SRH) guideline for CF providers and no data specific to their patients' SRH needs. Parents, adolescents, and providers consistently report the importance of and need for improved SRH education in CF care. However, the vast majority of adolescents and their parents are not receiving SRH education from their CF care team. Adolescents with CF have similar rates of sexual activity, but are less likely to receive SRH care, and many see their CF provider as their primary care provider. They also have unique disease-specific SRH concerns. CF providers have reported that a standard guideline may improve their confidence and comfort.Methods: Adolescents and their parents were asked to complete a questionnaire about their or their child's SRH educational needs. Young adults were asked to complete a questionnaire about SRH education they needed as an adolescent. CF clinic staff were asked to complete a pre and post-survey. Data from the surveys were analyzed using descriptive statistics, the Mann Whitney U test, and content analysis of the qualitative data. Based on results from the needs assessment, a standard SRH guideline was developed using evidence-based recommendations. The guideline was presented to key stakeholders. CF staff were surveyed to assess their perspective on the feasibility and usability of the new guideline and perceived barriers to implementation. The guideline was provided to the CF center for adoption.Results: Twenty-nine adolescents and young adults and 17 parents completed the survey. Thirteen CF staff participated in the pre-survey and 8 participated in the post-survey. Only 31% of adolescents and young adults reported they have talked with a CF provider about SRH, and 47.2% of parents reported their child has talked about SRH with a CF provider. Almost all participants reported they want CF related reproduction included in SRH education. Half of the surveyed CF staff agreed that the proposed guideline was sustainable and easy to use. There was no statistically significant difference found in the CF care team's self-assessment of confidence and comfort in providing SRH education and having the needed resources and skills. Although not statistically significant, CF clinic staff that reported they include/would include SRH education in their practice increased from 50% to 87.5%.Conclusion: The findings in this project confirm the significant need for improved SRH education for adolescents with CF and the need for standardization in care. Adolescents in this CF center want more information about SRH from their CF care team. The lack of statistically significant differences in the CF staff results could be related to sample size as well as the resistance to practice change in a busy specialty clinic. The results of the needs assessment and the SRH guideline were presented to the CF staff and a foundation for improvement was initiated. Future projects are needed to address barriers and implement an SRH guideline.