Contraceptive decision-making in women with cystic fibrosis: A qualitative study
Awarded 2014
Complex Family Planning Fellowship Research
Sarah Traxler, MD
University of Pennsylvania

Prior to the 1980s, most people with cystic fibrosis (CF) did not live beyond their 20s.  However, considerable advancement in medical treatment of the disease has increased the life expectancy to a median age of 41 years.  As a result, many women with CF are living through their reproductive years, making fertility and reproduction new health priorities.  Based on limited reports, contraceptive use in women with CF appears to be well below that seen in the general population of women in the United States, increasing the concern for unintended pregnancy in this population.  
Physiologic changes of pregnancy, while easily compensated for in healthy women, can negatively impact the health of women with CF, especially at times when health status is sub-optimal.  Maternal and fetal outcomes heavily depend on health status at the time of pregnancy with death more likely in women with poor lung function.  Thus, as more women with CF enter their reproductive years, access to effective and safe contraception is essential in order to assist in optimal timing of pregnancies.
Published data on appropriate contraceptive methods to use in women with CF are inadequate.  Safety data and interactions with disease processes are unknown, and the Center for Disease Control and Prevention’s (CDC) US Medical Eligibility Criteria for Contraceptive Use does not specify guidelines for offering contraception to women affected by CF.  Given the reported low utilization of hormonal contraception in women with CF, our group sought a deeper understanding of the contraception decision-making process in women with cystic fibrosis.
We conducted our study using qualitative methods via in-depth, one-on-one, semi-structured interviews. Participants were included if they were female between the ages of 18 and 45 with a diagnosis of CF. Interviews were conducted in person or on the phone by a trained interviewer.  We continue interviews until thematic saturation was reached.  The interview guide included the following subject areas: 1) pregnancy attitudes, 2) contraception attitudes and 3) perceptions of fertility.  Interviews were audiotaped and then transcribed, coded independently by two study team members and analyzed using a modified grounded theory approach. 
Twenty-four women were interviewed.  Participants reported pregnancy intentions to be influenced by a sense of urgency to become pregnant due to a shortened life span and reported that pregnancy intentions are impacted by personal health status as well as ethical issues concerning impact of CF consequences on a potential child.  Participants reported misconceptions about contraception such as interactions with other medications and pervasive skepticism about long-acting reversible contraceptive (LARC) methods.  Many reported that beliefs around CF-related infertility led to non-use of highly effective methods of contraception.  While medical providers were described as valuable participants in shared decision-making about family planning and contraception, many reported that providers lack knowledge and miss critical periods for communication, such as during transitions of care.
This sample of women with CF described thoughtful considerations about pregnancy intentions and desire pregnancies to be planned during times when health is optimal, but misconceptions about fertility and contraception interfere with their ability to use highly effective methods of contraception.  Medical providers, valued for their expertise in shared decision-making, can bridge this gap, facilitate fully informed decisions about contraception, and determine the best recommendations for women with CF around childbearing.

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