Only half of women with cystic fibrosis (CF) report using contraception and frequently apt to become pregnant unintentionally, according to a new study from researchers at the Perelman School of Medicine at the University of Pennsylvania. The results of the study were presented earlier this week at the 2015 American Congress of Obstetricians and Gynecologists Annual Clinical and Scientific Meeting in San Francisco. As recently as the 1960s, children with cystic fibrosis – an inherited disease that causes thick, sticky mucus to form in the lungs, pancreas, and other organs – often died before attending elementary school. Today many people with the disease live into their 30s, 40s and beyond.
“As the median age of survival for women with cystic fibrosis rises, reproductive health is becoming increasingly important in this population,” said lead author Andrea H. Roe, MD, an OB/GYN resident at the Hospital of the University of Pennsylvania. “While this once was not an issue, what we found is that participants in our study are sexually active, but contraceptive use is inadequate.”
The researchers used a survey to assess reproductive health and quality of life in patients with cystic fibrosis. Female participants aged 18 to 45 years were recruited through the electronic mailing list of the Penn Adult Cystic Fibrosis Program. Among 53 women surveyed, 83 percent reported being sexually active and 27 percent said they had been pregnant. Twenty-two percent of reported pregnancies were terminated, due to either unplanned pregnancy or suboptimal health status. Forty-nine percent of participants said they use contraception, compared to 65 percent of women in the same general U.S. population. Furthermore, women with more severe CF disease were revealed to be less likely to use contraception. Condoms and oral contraceptive pills were the most commonly used methods.
“With less than half reporting that they use contraception, there is clearly a significant unmet need for contraception in this population,” said senior author Courtney A. Schreiber, MD, MPH, an associate professor of Obstetrics and Gynecology at Penn. “Participants said they prioritize effectiveness and ease of use in their contraceptive method. They also want to avoid side effects and diminished sexual enjoyment. It’s important that physicians working with this population discuss these matters with them so that women with CF can avoid unintended pregnancy, especially in the context of a heritable disease that may be exacerbated by pregnancy. Pregnancy planning is important in the population.”
Other Penn co-authors are Sarah Traxler, MD, a fellow in Penn’s Family Planning program, and Denis Hadjiliadis, MD, PhD, director of Penn’s Adult Cystic Fibrosis Program.