NIH grant examining fertility preservation counseling for women with cystic fibrosis

Photo: Sigrid LadoresThrough a two-year, nearly $150,000 R03 grant from the National Institute of Health UAB School of Nursing Associate Professor Sigrid Ladores, PhD, RN, PNP, CNE, is studying a part of cystic fibrosis many studies overlook — the state of fertility preservation counseling 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.

Ladores’ is focusing this study 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 said.

“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.”

“This study aims to capture the perspective of the ‘Three P’s’ — patient, partner and provider — in the conversation around fertility preservation,” Ladores continued. “A lot of work in reproductive or sexual health focuses on the patient, but 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.”

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.

“The implications of this study are that I can hopefully set up clinical practice guidelines to inform conversations regarding fertility preservation across the transplant population,” Ladores said.

The next step could be an R21 or R01 grant, through which Ladores could expand the study to include transplant as well as CF providers or to look at fertility preservation counseling across the transplant population (and not just lung), respectively.

Receiving this grant was exciting, Ladores said, because it was the first NIH grant for which she applied. Her late mentor, former Associate Dean for Research Karen Meneses, PhD, RN, FAAN; current mentor Professor and Marie L. O’Koren Endowed Chair in Nursing Marie Bakitas, DNSc, CRNP, NP-C, AOCN, ACHPN, FAAN; the team within the Office of Research and Scholarship; and the UAB Gregory Fleming James Cystic Fibrosis Research Center provided support throughout the grant process and ultimately pushed her to success.

“We celebrate all of these grants with the ORS staff because they put in so much effort throughout the submission process,” Ladores said. “This is also a bittersweet award because it was one of the last projects that Dr. Meneses and I worked on together. Researchers receive many denials and rejection letters throughout the grant process, but I’d encourage everyone to maintain their persistence and grit. Grant writing is truly a labor of love, and I’m very fortunate to have a team of supporters working with me through this process.”

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