Results from a recent study conducted by a team of researchers from the University of Pennsylvania’s Perelman School of Medicine indicate that only half of women with a diagnosis of cystic fibrosis (CF) use contraceptives and often opt for unplanned pregnancies. The study findings were presented last week during the 2015 Annual Clinical and Scientific Meeting for the American Congress of Obstetricians and Gynecologists that took place in San Francisco.
Children with cystic fibrosis up until the 1960s often died before elementary school, well before reaching reproductive age. However, nowadays people with CF — a hereditary illness that causes thick, sticky mucus in the lungs, and other organs — live into their 30s, 40s and beyond. The longer lifespan is opening up the possibility for people with the disease to conceive and have children — a quality of life improvement that is generally celebrated by the cystic fibrosis community. However, pregnancy in CF brings with it complications that researchers argue must be mitigated through a more planned pregnancy approach.
“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 in a recent news release. “While this once was not an issue, what we found is that participants in our study are sexually active, but contraceptive use is inadequate.”
In the study, the research team used a survey to examine CF patients’ quality of life and reproductive health. Female patients between 18 to 45 years old were recruited through the Penn Adult Cystic Fibrosis Program electronic mailing list. From the total of 53 patients recruited, the researchers found that 83% reported being sexually active and 27% reported that had been pregnant.
The results revealed that 22% of the patients said that they terminated their pregnancies due to suboptimal health status or an unplanned pregnancy. The results also revealed that 49% of patients said they normally used contraceptives, in comparison with 65% from the United States general population. The researchers also found that women with more severe CF disease were less likely to use contraceptives.
“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.”