Sexual and reproductive health behaviors and experiences reported by young women with cystic fibrosis

Abstract

CF Foundation (KAZMER15A0); U.S. National Institutes of Health (UL1TR000005).

Failure to conceive in women with CF is associated with pancreatic insufficiency and advancing age

“…The majority of people with CF are adults 1,2 . They lead active lives similar to healthy adults of similar age including education, employment, sexual relationship and reproduction 3 . In men with CF, infertility due to complete bilateral absence of vas deferens (CBAVD) is almost universal.…”

Outcomes of pregnancy in women with cystic fibrosis (CF) taking CFTR modulators – an international survey

“…These considerations are particularly relevant given that in a recent survey 78% of young women expressed a desire to have children in future [23] . There are also several mechanisms by which CFTR modulators could increase the fertility of women with CF.…”

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

“…In a prior qualitative study, adult women with CF voiced a desire for normalcy and autonomy in reproductive decision making and pregnancy planning . In addition, as nearly eighty percent of U.S. adolescent and young adult women with CF desired future children, it appears that adolescent girls with CF are growing up with expectations for their reproductive lives similar to their healthy peers . Embedding CF information into a general SRH resource may reaffirm this sense of normalcy as adolescent girls with CF can view disease‐specific information alongside general guidance.…”

“…1,2 In a recent survey of 15-24 years old women with CF, one third perceived pubertal delay compared to their peers, nearly one in six reported experiencing urinary incontinence and/or sexual dysfunction, and half had had a yeast infection. 3 In addition, compared to the general United States (U.S.) population, young women with CF were significantly less likely to have ever used contraception or received contraceptive counseling, obtained STI or pregnancy testing, or undergone cervical screening (Pap smears and/or pelvic exams). 4 Unfortunately, despite these significant gaps in comprehensive care, SRH is not addressed in a systematic way in the CF clinic.…”