Reproductive Knowledge and Preferences of Adolescents and Adults with Cystic Fibrosis: A Web-Based Assessment

ABSTRACT

The reproductive consequences of cystic fibrosis (CF) have increased in relevance as individuals with CF now live well into their reproductive years. This article describes the first Internet-based study of sexual and reproductive health (SRH) knowledge, experiences, and preferences of adolescents and adults with CF participating in an online discussion board. Although broad SRH knowledge was demonstrated, CF-specific SRH knowledge was incomplete. Respondents reported wanting providers to initiate reproductive health discussions and offer more CF-specific SRH information. Respondents also reported experiencing a variety of disease-specific reproductive health issues (e.g., shortness of breath with sexual activity, vaginal dryness due to viscous mucous, etc.). Future research should explore how to enhance access to disease-specific SRH information.

KEYWORDS:

• Chronic illness
• cystic fibrosis
• sexual and reproductive health

The authors would like to express their sincere thanks to all of the adolescents and adults who took part in the study and to Rachel K. Myers for her assistance with reviewing and editing the manuscript. They would also like to express their sincere thanks to the following funding sources: the Craig-Dalsimer Fund and the Society for Adolescent Medicine Career Development Award (awarded to the first author). The study sponsors did not have any involvement in the study design, collection, or analysis and interpretation of data nor did they play a role in the writing of the manuscript or the decision to submit the manuscript for publication. The authors have no financial disclosures to report. None of the authors have any personal financial interests related to the subject described in this manuscript nor do they have any relationship with other persons or organizations that could inappropriately influence their work in this study.

Notes

¹All contact was made over the Internet and visitors were informed of the following: “Your ideas are important! I am an adolescent medicine doc interested in what you have to say. If you are interested in completing a research study about trends with CF, click on the link below or paste it in your browser. All responses are 100% anonymous. Thank you!”