PRP068: Cystic Fibrosis-Sexual and Reproductive Health Issues in Women’s Lives: an Online Resource Guide for Patients and Providers

Sandra Sufian, PhD, MPH; GEORGIA BROWN, BS, MA; Molly Pam; Melissa Shiffman, LMSW, MA; Megan Lepore, MA, MPP; Laura Mentch, MEd


CONTEXT: Due to increased life expectancy, sexual and reproductive health (SRH) concerns have gained heightened importance as women with the rare genetic disorder, Cystic Fibrosis (CF), are entering new life phases. To respond to this need, the Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC; is creating an online CF-SRH Resource Guide written by adult women with CF for women’s health and primary care providers, CF specialists, and their female patients. OBJECTIVE: We are developing the guide to increase providers’ knowledge of CF-SRH issues, to suggest how to best address disease-specific SRH concerns in clinical care, and to empower women to serve as co-educators to improve mutually informed, shared decision-making. STUDY DESIGN: Our community-based project utilizes patient-centered outcomes research principles to execute the work. Writing team members plan, research, and write 1 of 11 chapters on topics prioritized by a survey of 200 women with CF. CFReSHC holds 2-hour virtual, monthly workshops with patient-partners to explore a designated topic (e.g., body image, pregnancy, incontinence). At every workshop, an invited expert presents her research related to the designated topic. Writing teams then present their chapter draft for feedback. In breakouts, attendees brainstorm topic-specific questions for providers to ask patients and for patients to ask providers during the clinical encounter. Women exchange peer-to-peer advice to manage symptoms or address life decisions relating to the specific topic. The workshop ends with a poll asking attendees to rank the top questions (for providers; for patients), peer advice items, and resources derived from the breakouts. The poll is also disseminated to women who did not attend the workshop for input. Poll results are integrated into chapter revisions. Clinician and medical decision-making consultants provide feedback on the finalized guide draft. OUTCOMES: The described processes have strengthened virtual patient engagement among adult women with CF and can be leveraged by other disease populations to the same effect. Finalized chapters will provide valuable information to enhance communication, shared decision-making, and patient-centered clinical care. We will launch the completed online resource guide in September 2020 on the Collaborative’s website to optimize primary and specialist care.
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Connie van Eeghen 11/22/2020

I am so impressed with the work done and the active participation of members of the Collaborative. The handout is a great indication of the resources available. I hope dissemination is broad and implementation long-lasting.

Emily Godfrey 11/22/2020

Great work Sandy! Im glad to see that this hard earned guide is reaching many audiences.

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