The advent and use of effective CF modulator therapies has led to more people with cystic fibrosis (CF) living longer and healthier lives, and now a growing number are considering parenthood. However, minimal information exists about how parenthood affects those with CF, limiting the ability to make informed reproductive decisions and to support those who decide to become parents.
This long-term, multicenter, observational study jointly funded by the National Institutes of Health and the Cystic Fibrosis Foundation is determining the health impact of parenthood on people with CF in the era of CF modulators and is the first, large-scale epidemiologic data collection of how becoming a parent interplays with having a chronic disease.
Throughout the 7-year long Health Outcomes of Parents with CF (HOPeCF) study, CF centers across the United States, led by the Kazmerski Lab, have come together to discover the impact of parenthood and how we can best support parents and prospective parents with CF.
In conjunction with researchers from CONVERGE at the University of Pittsburgh and Dezudio, an information design consultancy, and funded by the CF Foundation, the Kazmerski Lab developed MyVoice:CF, a web-based, patient-facing decision support tool designed to help women with CF learn about CF-specific concerns related to fertility, pregnancy, birth control, and parenting as well as help them initiate family planning conversations with their CF care team.
We have completed a feasibility trial of MyVoice:CF which assessed the acceptability and usability of MyVoice:CF among reproductive-aged women with CF. We also conducted interviews with adolescents with CF and parents to assess the acceptability of the MyVoice:CF tool for a teen population. We are also currently collaborating with international researchers on adaptations of the tool.
The Kazmerski Lab plans to conduct a larger trial assessing the impact of MyVoice:CF on reproductive health communication and key health outcomes. Future iterations of the tool should include relevant perspectives and content for people with CF of all gender identities.
Sexual and Reproductive Health of Males
with Cystic Fibrosis
Males with CF face several disease-specific sexual and reproductive health concerns including near-universal infertility. To better understand the frequency, severity, and knowledge of these issues, the Kazmerski Lab received funding from the CF Foundation to conduct a multi-center survey to investigate the sexual and reproductive health behaviors, experiences, care utilization, and preferences of people with CF assigned male at birth aged 15 years and older. We are comparing findings to United States population-based data from the National Survey for Family Growth. The project also describes the range of male CF-related reproductive health concerns and care preferences, including which topics they desire to discuss with a healthcare provider.
We also surveyed multidisciplinary CF providers to understand their attitudes and practices toward male sexual and reproductive healthcare in CF. Finally, we engaged with key constituents in a concept mapping study to understand the important sexual and reproductive health topics for those assigned male at birth with CF as well as identify key measurable outcomes for future studies.
PRIDE CF is a CF Foundation-funded Health Equity Team Science initiative which is comprised of four projects with the unified goal of better understanding the interplay of being a member of the LGBTQIA+ community and living with CF.
Our team includes national and international experts in pulmonology, endocrinology, adolescent and young adult health, and mental health. We have the shared goal of improving health equity for LGBTQIA+ people with CF.
To develop system-wide equity-focused interventions, we need to gain a deeper understanding of the unique needs of LGBTQIA+ people with CF. The Kazmerski Lab is working on understanding the perspectives and practices of CF providers related to the care of LGBTQIA+ people with CF and how being LGBTQIA+ impacts CF health outcomes using data from the United States CF Foundation Patient Registry.
To address the unique and emerging needs of people with CF, the CF Foundation established a research working group to identify knowledge gaps, determine research priorities, and develop the infrastructure needed to conduct the research related to sexual, reproductive, and gender health.
Dr. Kazmerski is the current Vice Chair of SHARING and the Kazmerski Lab is involved in many national and international initiatives and collaborative research as part of this work.