(264) Prioritizing Sexual and Reproductive Health Research and Care for People with Cystic Fibrosis: A 2023 Workshop Report From the Cystic Fibrosis Foundation Sexual Health, Reproduction, and Gender Research (SHARING) Working Group
Authors: Leitner D , Moy C , Jain R , Jessica H , Wright B , Poranski M , Sjoberg J , Taylor-Cousar J , Georgeopoulis A , Ladores S , Trimble A , Tangpricha V , Naz-Khan F , Ramasamy R , West N , Delos Santos R , Stansky O , Wilson A , Keller A , Kazmerski T 
Published: February 2024

Introduction

With therapy advances, people with cystic fibrosis (CF) are living longer, healthier lives, and thus increasingly have general and CF-specific sexual and reproductive health (SRH) questions. The CF Foundation is supporting the Sexual Health, Reproduction, and Gender Research (SHARING) Working Group to identify knowledge gaps, research priorities, and infrastructure needed for CF SRH research. SHARING includes pulmonologists, nurses, research coordinators, registered dieticians, psychiatrists, endocrinologists, reproductive urologists, and community members with CF.

Objective

In Spring 2023, SHARING developed and distributed a SRH prioritization survey for the CF community. During the annual in-person workshop, the group used these results to establish research priorities and develop studies that would address identified knowledge gaps.

Methods

SHARING partnered with Community Voice, a virtual platform for people with CF and their caregivers to share their perspectives on ongoing and future CF SRH research, care, and programming. We provided a list of 15 SRH research topics and asked respondents to rank the top five. We analyzed survey results using descriptive statistics. We also summarized discussions and future key directions for CF SRH research.

Results

A total of 303 respondents (85% people with CF and 15% caregivers) completed the survey. Sixty-five percent of people with CF were women and 37% of the people with CF for whom caregivers responded were women/girls. The majority (95% of adults, 98% of people with CF for whom caregivers responded) identified as White; 5% of adults and 10% of people with CF for whom caregivers responded were Hispanic/Latino. The majority (73%) of people with CF were &gt;30 years old and 68% of those with CF for whom caregivers responded were &lt;18 years old. Table 1 summarizes respondent demographics. The top five SRH topics were: 1) effects of CF modulator therapy (elexacaftor/tezacaftor/ivacaftor, ETI) on sex hormones; 2) effects of sex hormones on CF; 3) fertility; 4) pregnancy; and 5) SRH/mental health (Figure 1). People with CF prioritized pregnancy, sexual functioning, parenthood, and menopause, while caregivers prioritized ETI effects on sex hormones, fertility, mental health, and assisted reproductive technology (ART). SRH priorities differed by gender identity. Men and caregivers of men/boys prioritized fertility, mental health, SRH care provision, sexual functioning, and ART, while women and caregivers of women/girls prioritized the effect of sex hormones in CF, pregnancy, menopause, and contraception. During workshop proceedings, SHARING identified the need for further research on the interplay between sex hormones, CF pathophysiology, ETI, fertility, and ART, and a focus on the impact of infertility on mental health for males with CF.

Conclusions

SRH is an important and emerging area of research in CF. Research priorities are not uniform among people with CF and their caregivers, particularly across genders. Thoughtful consideration of such perspectives can ensure that future CF SRH research is relevant and responsive to CF community needs. SRH providers should be aware of the concerns in this understudied population from research and patient care perspectives.

Disclosure

No.