Cystic Fibrosis Sexual and Reproductive Health Guide
Created by CF Patients for Providers and Patients
This guide serves to educate clinicians and patients about issues that affect adult females with CF, and to facilitate conversations between health care providers and patients.
Funded by a Cystic Fibrosis Foundation Impact Award (2019-2020)
with additional funding from the Patient-Centered Outcomes Institute (PCORI)
Sandy Sufian, PhD, MPH
University of Illinois at Chicago
Georgia BrownMegan Lepore
CFReSHC Patient Task Force
Susie Baldwin MD MPH
Emily Godfrey MD MPH
Andrea Roe MD
Patricia Walker MD
We are thrilled to publish the CFReSHC CF-Sexual and Reproductive Health (CF-SRH) Resource Guide.
This online guide is the product of a year-long, patient-driven initiative, funded by a Cystic Fibrosis Foundation Impact Award, with additional funding from a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Award.
The Purpose of the Guide
This CF-SRH Resource Guide written by Patients for Providers and Patients has 2 main purposes. It is meant to:
1) inform health care providers and raise awareness for patients about CF-SRH issues. We empowered women with CF to serve as co-educators by creating content on different CF-SRH topics for clinicians to use as a resource.
2) provide patients and providers with information and guidance on how to integrate and address CF-SRH concerns into clinical practice. As such, the guide is intended to help improve the standards of care for women with CF.
CF specialists, women’s health providers, primary care providers, and adult women with CF comprise our intended audience. Of course, other interested parties (e.g. other chronic disease communities) are welcome to use this guide to help them think through the ways they can drive their own healthcare and/or their own clinical practice.
What you will read in our CF-SRH Resource Guide is the product of exceptional commitment, hard work, perseverance, and an abundance of creativity by adult women with CF. We believe this guide offers providers information and a window into women’s perspectives, experiences, and strategies that can be garnered to initiate a conversation with their female patients about the pressing CF-SRH issues they face and to engage in shared decision-making to manage them. We also hope this guide offers adult women with CF a language, a trove of information, peer advice, and a set of questions to use in clinic to start a dialogue about the CF-SRH issues that are foremost on their mind at particular moments in their lives.
Overview of Cystic Fibrosis-Sexual and Reproductive Health (CF-SRH)
As therapies to manage cystic fibrosis (CF) have drastically improved, the life trajectories of women with CF have significantly changed. Not only are women living longer, but they are facing the joys, challenges, decisions, and symptoms related to their sexual and reproductive health (SRH) with curiosity and wonder but also with some uneasiness, frustration, and concern.
Longevity forces changes in the provision of CF care and research. It poses new opportunities for women with CF to explore their sexuality, build intimate relationships, date, get married or divorced, have children/build a family (or not), and even to enter menopause. It also allows us to turn our attention as a chronic disease community to women’s new lived experiences or to revisit other CF-SRH experiences that have heretofore been largely ignored or overlooked.
Some of these experiences relate to social milestones, struggles, and decisions, like dating, making family-building decisions, mothering, breastfeeding, or struggling with shame about one’s body. Others are more clinical in nature and intersect with the management of CF and its symptoms, like menstruation, yeast infections, incontinence, fertility or depression. In the lived experiences of women with CF, these issues are frequently inseparable; they can overlap, work in tandem, recede or (re)materialize at various periods of one’s life.
Indeed, there are a multitude of new questions about the interface of CF with sexual and reproductive health that remain under-researched or unexplored. Moreover, like so many women with disabilities, women with CF as a group fail to receive the recommended level of gynecological care .
Deficits in access to quality care are matched with women with CF’s gaps in knowledge and misconceptions about sexual and reproductive health (SRH) issues. Gage has summarized the knowledge gaps that exist among women with CF, finding that female patients with CF lack sufficient knowledge of and want more information about the physiological, genetic and psychosocial aspects of sexual and reproductive health (SRH) issues. Kazmerski has done similar work for young women with CF. For both adult and young women with CF such knowledge is vital to facilitate their ability to adequately engage in sexual and reproductive decision-making [2,3]. Gage’s analysis of the extant literature leads her to conclude that “rigorous research is needed that investigates the extent to which a large sample of women with CF in the United States receive the sexual and reproductive knowledge they need to make informed decisions about their health [2,3]. In particular, because social workers inhabit an important role in addressing the psychosocial aspects of CF care, Gage believes that the social work literature should pay more attention to the sexual and reproductive health issues of patients with CF and other chronic conditions . Even broader is the need to focus on providers’, patients’, and parents’ knowledge and skills to provide better services for women with CF. As pulmonologists, CF providers, in particular, may view these issues as outside their area of expertise . This is one reason we have undertaken this resource guide project.
To be sure, scientific and experiential knowledge about CF-SRH issues is still emerging, especially since new therapies, like CFTR modulators, are creating unique CF-SRH symptoms and horizons. Efforts are now underway to address these CF-SRH clinical and psycho-social issues through research; clinicians are increasingly taking interest in adult women’s distinct challenges in order to optimize their well-being; women with CF are creating peer networks to share their expertise and guide each other through this complex terrain. What is clear, is that women know their bodies exceptionally well, are voicing their needs and questions, and are authoring their own, diverse life stories.
The Story of CFReSHC and the Guide
In 2018, Dr. Patricia Walker, Adult CF Clinic Director at Mt. Sinai Hospital, suggested to Dr. Sandy Sufian, principal investigator of a two-year CF Reproductive and Sexual Health Collaborative (CFReSHC) Impact Award project (2018-2020) to deepen the patient engagement work that CFReSHC was already doing for three years with patient-partners by creating a resource guide by patients for providers about the interface of Cystic Fibrosis (CF) with sexual and reproductive health issues (CF-SRH). Walker noted that she learned the most from her patients and that developing a guide from the perspective of patients would be incredibly valuable to CF and other clinicians, particularly because there were so many knowledge and service gaps about CF-sexual and reproductive health issues.
To be sure, the Cystic Fibrosis Foundation and CF physicians have produced very useful material about this and other topics, but to gain the perspectives of adult women who live with the disease would be a unique, significant undertaking. Shifting authorship would shift authority to patients. This type of work fits right in with the mission of CFReSHC: to respond to the needs of the CF community by paving the way for improved CF-SRH resources, healthcare, and knowledge for women with CF. CFReSHC aims to optimize the health and well-being of women with CF by creating a space to pursue patient-driven research priorities, and offer recommendations to improve the provision of care for the CF community.
CFReSHC started with a Patient Centered Outcomes Institute award (PCORI) as a way to establish a collaborative structure between researchers, clinicians, and women with CF to address research gaps and generate research questions about CF-SRH that are meaningful to the community they affect. We use the principles of Patient Centered Outcomes Research (PCOR) of trust, honesty, co-learning, transparency, reciprocal relationships, partnership, and respect, all set forth by PCORI (www.pcori.org) to structure our collaborative work. We made sure to actively engage patients as equal partners in our endeavor.
Under our PCORI award (2016-2018; PI: Emily Godfrey, MD, MPH) and the first year of our Cystic Fibrosis Foundation (CFF) Impact Award (2018-2019; PI: Sandy Sufian, PhD, MPH), CFReSHC held monthly meetings for women with CF, planned by women with CF to share their experiences, identify needed areas of research, generate meaningful research questions, and specify suggested improvements to CF-clinic practices. This group within CFReSHC, called the Patient Task Force (PTF), grew from 25 to over 200 women during this time. We established a three-pronged structure–a Governance Board, Research Advisory Panel, and the Patient Task Force to fulfill our mission, making sure to have patients serve as key members in all these groups. We established an online presence via this website, social media (Facebook: @cfreshc1; Twitter: @CFReSHC; Instagram: CFReSHC), and monthly e-newsletters for our members. We also established working groups on 6 patient-identified, priority CF-SRH topics to develop viable research projects that used the questions women had generated to shape our agenda. We applied for several research grants and presented our work at numerous conferences. In significant ways, we helped to call attention to CF-SRH issues within our community.
So when Dr. Walker recommended her idea, CFReSHC had a solid infrastructure and a set of methods in place. We were making plans to embark on our continuation (second-year) Impact Award and adopted the resource guide as our new project.
Structure of the Guide
We took several steps to develop this guide. We started by conducting a survey in May 2019 that provided women with CF the opportunity to select their top CF-SRH concerns that they wanted to include in the guide. We also solicited feedback from attendees on its design and development.
From the results of that survey, we outlined the structure and components of the guide and invited women to be on chapter writing teams, according to their interests. Each team consisted of 3 patient-partners. We also engaged our Patient Task Force Leadership Committee members (PTF-LC) to lead two chapter teams each. Numerous women from our Patient Task Force expressed their desire to take part.
We established the organization of the guide, as reflected in its table of contents. We also developed a chapter template for chapter teams to generally follow as a way to give some guidance while still allowing female writers to focus the chapter in a way they agreed upon and present its contents according to a team consensus.
The chapter template included the following key elements. Readers will see, more or less, these components in each chapter:
- Priority Questions: These questions are the result of brainstorming sessions that took place in our PTF meetings (see methods section). There are two types of questions– provider to ask patient and patient to ask provider–and are meant to start a conversation during a clinic visit about various areas of CF-SRH.
- Personal narratives by women with CF that share their personal experiences with the SRH chapter topic.
- SRH Scientific Content that covers basic information about the chapter’s SRH issue, how this issue impacts women with CF, the extant research, and any knowledge gaps.
- Psychosocial Issues that are relevant to discussion of the chapter topic. Women’s inclusion of these issues is meant to acknowledge and explore the non-physical aspects of the chapter topic.
- Peer-to-Peer Advice: points of adult female-to-female advice and patient strategies about the said chapter topic. This advice comes out of the brainstorming sessions during our PTF meetings.
- Resource Links: The resources section has two discrete emphases: websites on SRH or CF or both and a list of relevant listservs and organizations.
- Works Cited: a list of articles cited in the chapter. We hope readers use this list to begin their own reading on the chapter topic.
The Resource Guide project had two major components: 1) researching and writing the chapters and 2) holding our Patient Task Force meetings on the chapter topics.
Chapter Writing component: Women who were so inclined chose one of the designated topics ranked in the initial survey. We wanted to expose our patient-partners to the process of finding, reading, and writing about the research that exists on a variety of CF-SRH topics. In the spirit of the women’s health movement and Our Bodies, Ourselves, we used the project’s collaborative writing tasks and meeting format to enable women with CF to become more active in their engagement with CFReSHC and in our Patient Task Force meetings, and to promote self-empowerment overall. We wanted to respond to women’s expressed need for accurate sexual health information; we welcomed women’s input, experiences, and voices in this regard.
We tasked members of our patient task force leadership committee (PTF-LC) with leading two chapter teams. We prepared a comprehensive packet that explained the project, its design, the year’s meeting schedule, team emails and assignments, our meeting format, a sample chapter, a list of suggested resources to get started, the roles and responsibilities of each person on the project, a facilitation/notetaking guide, and revision instructions. The PTF-LC members each worked with their team(s) to set the agenda for the chapter, create a presentation, and ensure that the draft, presentation, and revisions were done on time, according to a deadline schedule.
PTF monthly meeting component: A total of 12 virtual monthly PTF sessions provided a space for teams to workshop each focus topic of the guide. Our project design utilized our existing PTF meeting format but adjusted it and added new writing components to shift the project’s objectives, deepen our patient-partners’ engagement, and provide an avenue to best educate and encourage their voices.
Our first PTF meeting oriented our patient-partners to the project, its goals, and methods. Therefore, each of the 11 meetings (which occurred approximately every month) focused on a chapter topic and lasted two hours. We set up a schedule for these meetings so that our patient-partners could save these dates on their calendars and so that the writing teams would know when they were set to present their chapter draft. A meeting committee on the project team secured speakers according to this schedule, with adjustments to the original meeting dates as needed. A communications committee on the project team sent out meeting announcements on social media, calls for patient narratives, and other posts to stir interest in our work. A newsletter recapping the meeting’s presentation and a recording of the meeting presentation allowed women who could not attend to still have access to a summary.
Chapter team members served as the facilitators and notetakers of the breakout sessions during the meeting on the focus topic. Prior to each meeting, we held a virtual facilitation/notetaking training session for members of the chapter team whose topic was the meeting’s focus.
Our 2019-2020 PTF meeting format enabled attendees to hear a speaker(s)’ presentation on that topic; listen to and provide feedback on the writing team’s chapter draft; and to collaboratively formulate questions that providers and patients can ask of each other so that women’s needs are met. Women also brainstormed peer advice on CF-SRH issues. At the end of the meeting, the women in each breakout room reported back the key points of their discussion. We then conducted a poll during the meeting and on social media (for those couldn’t attend) that gave our patient-partners an opportunity to rank the top questions and peer advice developed during brainstorming, the content of which was then integrated into the revised and final chapter.
We believe our project design can serve as a potential model for virtual patient engagement using PCOR principles. These methods proved fruitful in fulfilling our goals and producing this guide.
We have produced a CF-SRH Resource Guide by patient for Providers and Patients, with 11 chapters based on a total of 242 sources.
We invite healthcare providers to read through the chapter content so they can effectively broach a conversation about an SRH issue even before their female patients do. These providers can use the priority questions to initiate a dialogue with their patients about these pressing issues. They can also review the content in this guide as a proactive measure to learn patient perspectives about the interface of CF with a variety of SRH issues. The guide will certainly be useful when the clinic has a woman who is facing a specific CF-SRH issue. Hopefully the guide will inspire care teams and individual providers to equip themselves with the knowledge presented here.
We invite patient readers to print out the chapters that discuss issues they are currently experiencing, expect to, or in which they are simply interested. They can bring this material to their appointments, share it with their providers, and use the priority questions to start a conversation during the clinical encounter. We hope they can use the wealth of knowledge found in the peer-to-peer advice sections to navigate their own SRH experiences.
We welcome any comments on how you find this guide. Please email: firstname.lastname@example.org.
The Impact Award project team’s sincerest gratitude goes to the women with CF who are the Patient Task Force patient-partners of CFReSHC. We would like to acknowledge all the women who worked on this guide, either by writing chapters and presenting their work at a PTF (n=40), attending our PTFs (average n=20 per meeting) to share their experiences and to brainstorm with us, replying to our polls, and engaging with us on social media.
We must extend our thanks to the expert consultants, especially Susie Baldwin MD MPH, who reviewed the guide’s content to ensure its medical accuracy and overall scientific integrity. We appreciate their time and interest in making sure this guide resonates with providers and is valuable to patients.
We also thank two physician assistant students, Jackie Johnson and Elizabeth Bergstedt, for conducting a referral network project and for reviewing and improving the language of the priority questions to enable patient-centered, provider-patient communication.
This project could not have been done without our funders, the Cystic Fibrosis Foundation (Award number: SUFIAN18IM; IRB exemption: 20190681-124636-1) and PCORI (Award number: 10569-U Wash). Our CFF Impact Award Program Officers, Piper Beatty and Melody Zelenz, were extremely helpful with their guidance and logistical support. The Head and staff of the Department of Medical Education at the University of Illinois-Chicago provided invaluable, behind-the-scenes support for this grant. Impact Award project manager, Mallika Patil, helped put this guide online along with project team member Molly Pam. Katie Malik of Malik Creative Services designed the website.
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—–CFReSHC Patient Task Force meeting on (In)Fertility. 2.26.2020.
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—–CFReSHC Snap Poll on Incontinence. 7.27.2020.
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