NIH grant will examine fertility preservation counseling for women with cystic fibrosis

Sigrid Ladores, Ph.D.Preserving fertility in women with cystic fibrosis is the focus of an R03 grant awarded to a professor at the University of Alabama at Birmingham School of Nursing. Associate Professor Sigrid Ladores, Ph.D., received the two-year $150,000 award from the National Institutes of Health.

Ladores says fertility preservation counseling is often overlooked for women with cystic fibrosis.

“My bigger umbrella research area is reproductive health in women with cystic fibrosis because it is largely understudied,” Ladores said. “When we hear ‘cystic fibrosis,’ we hear lungs, we hear pulmonary function; there’s not a lot of focus on reproduction. I want to know if and how CF providers talk to women about what needs to be done if they want to have children.”

While more than 98 percent of men with CF are born infertile and require assisted reproductive technology to have biological children, fertility rates among women with CF are more uncertain. Women may have normal fertility pre-transplant; but following transplant, the medications they take, including immunosuppressants, carry potential risks to the fetus and the mother.

This study’s focus is on pre-transplant women with declining lung function, to see what information is discussed by their providers. Early discussion about cryopreservation of eggs or embryos gives women a chance to take the necessary steps to have a biological child post-transplant, Ladores says.

“These questions stemmed from women with CF,” Ladores said. “There is a lot of literature regarding fertility preservation in women undergoing chemotherapy, and it is considered routine care. Now, we want to translate that same standard of care into the CF world.”

With a total sample size of 190 in this mixed-methods study, Ladores will interview CF patients, partners and providers to determine the level of conversation around fertility preservation. After the survey data is collected, a smaller group will be invited to do a qualitative interview on the topic.

“This study aims to capture the perspective of the ‘Three P’s’ — patient, partner and provider — in the conversation around fertility preservation,” Ladores explained. “A lot of work in reproductive or sexual health focuses on the patient, but it does not look at the partner’s perspective. Including the partner is one of the more innovative parts of this study because they are an important part of the fertility and reproductive conversation.”

Ladores says she hopes to use information from the study to eventually set up clinical practice guidelines to inform conversations regarding fertility preservation across the transplant population.