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)(#10569-UWash)
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.
Get ready for post-menopausal zest: New creativity, sexual energy and confidence. https://www.high50.com/health/ready-post-menopausal-zest-creativity-sexual-energy-confidence. Website. Updated 2016.
All the fcking mistakes: A guide to sex, love, and life. The Publishers Weekly. 2019;266(36):54.
Abbott J, Morton AM, Musson H, et al. Nutritional status, perceived body image and eating behaviours in adults with cystic fibrosis. Clinical Nutrition. 2006;26(1):91-99. https://www.clinicalkey.es/playcontent/1-s2.0-S0261561406001476. doi: 10.1016/j.clnu.2006.08.002.
Adelaide Lindsay Withers. Management issues for adolescents with cystic fibrosis. Pulmonary medicine. 2012;2012:134132-10. https://www.airitilibrary.com/Publication/alDetailedMesh?DocID=P20150723002-201212-201707190006-201707190006-10-19. doi: 10.1155/2012/134132.
Agarwal S, Alzahrani FA, Ahmed A. Hormone replacement therapy: Would it be possible to replicate a functional ovary? International journal of molecular sciences. 2018;19(10):3160. https://www.ncbi.nlm.nih.gov/pubmed/30322209. doi: 10.3390/ijms19103160.
Ahluwalia M, Hoag JB, Hadeh A, Ferrin M, Hadjiliadis D. Cystic fibrosis and pregnancy in the modern era: A case control study. Journal of Cystic Fibrosis. 2013;13(1):69-73. https://www.clinicalkey.es/playcontent/1-s2.0-S1569199313001240. doi:10.1016/j.jcf.2013.08.004.
American Pregnancy Association. Constipation in pregnancy. https://americanpregnancy.org/pregnancy-health/constipation-during-pregnancy/. Updated 2020. Accessed 6.25.2020.
Anderson GL, Judd HL, Kaunitz AM, et al. Effects of estrogen plus progestin on gynecologic cancers and associated diagnostic procedures: The women’s health initiative randomized trial. JAMA : the journal of the American Medical Association. 2003;290(13):1739-1748. http://dx.doi.org/10.1001/jama.290.13.1739. doi: 10.1001/jama.290.13.1739.
—–Limacher M, Assaf AR, et al. Effects of conjugated equine estrogen in postmenopausal women with hysterectomy: The women’s health initiative randomized controlled trial. JAMA: the journal of the American Medical Association. 2004;291(14):1701-1712. http://dx.doi.org/10.1001/jama.291.14.1701. doi: 10.1001/jama.291.14.1701.
Anderson, R., Pearce, A., Graham, C., & Ingham, R. (2015). 289 How do men and women with cystic fibrosis think their illness and associated experiences affects their body image, sexuality, relationships and their ideas about parenthood? Journal of Cystic Fibrosis, 14, S132–S132. https://doi.org/10.1016/S1569-1993(15)30463-X. doi: 10.1016/S1569-1993(15)30463-X.
Baldwin S. CFReSHC Patient Task Force presentation on vaginal health. 2.12.2020
—–CFReSHC Patient Task Force presentation on vaginal health. 2.23.2019.
Barker H, Moses J, O’Leary C. ‘I’ve got to prioritise’: Being a parent with cystic fibrosis. Psychology, Health & Medicine. 2017;22(6):744-752. http://www.tandfonline.com/doi/abs/10.1080/13548506.2016.1233345. doi:10.1080/13548506.2016.1233345.
Bedsider. Which medication can mess with birth control? https://www.bedsider.org/features/294-which-medications-can-mess-with-birth-control Website. Accessed 1.2020.
Bitew A, Abebaw Y. Vulvovaginal candidiasis: Species distribution of candida and their antifungal susceptibility pattern. BMC women’s health. 2018;18(1):94. https://search.datacite.org/works/10.1186/s12905-018-0607-z. doi: 10.1186/s12905-018-0607-z.
Blackman SM, Tangpricha V. Endocrine disorders in cystic fibrosis. Pediatric Clinics of North America. 2016;63(4):699-708. https://www.clinicalkey.es/playcontent/1-s2.0-S0031395516300177. doi:10.1016/j.pcl.2016.04.009.
Blower K, DO, Seifi A, MD, Michalek J, PhD, Keyt H, MD. Incidence of VTE in patients with cystic fibrosis: Are they high risk? Chest. 2016;150(4):1135A. https://www.clinicalkey.es/playcontent/1-s2.0-S0012369216574443. doi:10.1016/j.chest.2016.08.1245.
Bolton MA, Lobben I, Stern TA. The impact of body image on patient care. Primary care companion to the Journal of clinical psychiatry. 2010;12(2). https://www.ncbi.nlm.nih.gov/pubmed/20694111. doi: 10.4088/PCC.10r00947blu.
Borowitz D, Lubarsky B, Wilschanski M, et al. Nutritional status improved in cystic fibrosis patients with the G551D mutation after treatment with ivacaftor. Dig Dis Sci. 2015;61(1):198-207. https://search.datacite.org/works/10.1007/s10620-015-3834-2. doi: 10.1007/s10620-015-3834-2.
Bray LA, Ladores S, Holland A, Ivankova N, Patrician P, Mrug S. Gender differences in health-related quality of life in adults with cystic fibrosis: An integrative literature review. Journal of nursing practice applications & reviews of research. 2009. doi: 10.13178/jnparr.2019.0901.0906.
British Lung Foundation. Suggestions for sex and breathlessness. https://www.blf.org.uk/support-for-you/sex-and-breathlessness/suggestions Website. Updated 2020. Accessed 6.14. 2020.
Bromberger JT, Epperson CN. Depression during and after the perimenopause: Impact of hormones, genetics, and environmental determinants of disease. Obstetrics and gynecology clinics of North America. 2018;45(4):663-678. https://www.ncbi.nlm.nih.gov/pubmed/30401549. doi: 10.1016/j.ogc.2018.07.007.
Burden C, Ion R, Chung Y, Henry A, Downey D, Trinder J. Current pregnancy outcomes in women with cystic fibrosis. Obstetrical & gynecological survey. 2013;68(2):87-88. http://ovidsp.ovid.com/ovidweb.cgi?T=JS&NEWS=n&CSC=Y&PAGE=fulltext&D=ovft&AN=00006254-201302000-00006. doi: 10.1097/01.ogx.0000427615.04275.c1.
Burke W, Aitken ML, Chen S, Scott CR. Variable severity of pulmonary disease in adults with identical cystic fibrosis mutations. Chest. 1992;102(2):506-509. http://dx.doi.org/10.1378/chest.102.2.506. doi: 10.1378/chest.102.2.506.
Caley L, Smith L, White H, Peckham DG. Average rate of lung function decline in adults with cystic fibrosis in the united kingdom: Data from the UK CF registry. Journal of cystic fibrosis. 2020. http://dx.doi.org/10.1016/j.jcf.2020.04.008. doi: 10.1016/j.jcf.2020.04.008.
Cammidge SL, Alistair J. A. Duff, Gary J. Latchford, Christine Etherington. When women with cystic fibrosis become mothers: Psychosocial impact and adjustments. Pulmonary medicine. 2016;2016:9458980-11. https://www.airitilibrary.com/Publication/alDetailedMesh?DocID=P20150723002-201612-201707110022-201707110022-120-130. doi: 10.1155/2016/9458980.
Campbell B, Bui DS, Simpson JA, et al. Early age at natural menopause is related to lower post-bronchodilator lung function: A longitudinal population-based study. Annals of the American Thoracic Society. 2020;17(4):429-437. https://search.datacite.org/works/10.1513/annalsats.201902-180oc. doi: 10.1513/annalsats.201902-180oc.
Campbell B, Simpson JA, Bui DS, et al. Early menarche is associated with lower adult lung function: A longitudinal cohort study from the first to sixth decade of life. Respirology (Carlton, Vic.). 2019;25(3):289-297. https://search.datacite.org/works/10.1111/resp.13643. doi: 10.1111/resp.13643.
Castleman M. Why so many women don’t have orgasms. trouble with orgasm? personal history matters less than direct caresses. Psychology Today. 2016.
Center for Young Women’s Health. Cystic fibrosis: Pregnancy and CF. Center for Young Women’s Health. https://youngwomenshealth.org/2018/01/31/cystic-fibrosis-pregnancy-and-cf/. Updated 2018. Accessed 6.25.2020.
Centers for Disease Control. US medical eligibility criteria (US MEC) for Contraceptive Use, 2016. https://www.cdc.gov/reproductivehealth/contraception/mmwr/mec/summary.html Website. Accessed 9.10.2020.
CF Reproductive and Sexual Health Collaborative. CFReSHC Patient Task Force meeting on Vaginal Health. 2.12.2020.
—–CFReSHC Patient Task Force meeting on (In)Fertility. 2.26.2020.
—–CFReSHC Snap Poll of Vaginal Health Treatment Options. 5.16.2020.
—–CFReSHC Snap Poll on Incontinence. 7.27.2020.
—–CFReSHC Snap Poll on Sexual Function. 7.28.2020.
—–CFReSHC Snap Poll on Body Image. 2.23.2020.
—–CFReSHC Patient Task Force meeting on Sexual Function. 6.3.2020.
—–CFReSHC Patient Task Force meeting on Body Image. 3.13.2020.
—–CFReSHC Patient Task Force meeting on Parenthood. 6.29.2020.
—–CFReSHC Patient Task Force meeting on Hormones and Cystic Fibrosis. 2.22.2018.
—–CFReSHC Patient Task Force meeting on Menopause. 7.12.2020.
—–CFReSHC Patient Task Force meeting on Family Building. 6.14.2020.
—–CFReSHC Patient Task Force meeting on Pregnancy. 5.14.2020.
—–CFReSHC Patient Task Force meeting on Contraception. 1.12.2020.
—–CFReSHC Patient Task Force meeting on Incontinence. 12.10.2019.
Chambers R, Chambers R, Lucht A, et al. Prevalence and impact of pelvic floor dysfunction in an adult cystic fibrosis population: A questionnaire survey. Int Urogynecol J. 2017;28(4):591-604. https://www.ncbi.nlm.nih.gov/pubmed/27738735. doi: 10.1007/s00192-016-3152-z.
Chen CY. Effects of parental chronic illness on children’s psychosocial and educational functioning: A literature review. Contemporary school psychology. 2017;21(2):166-176. https://search.proquest.com/docview/1992198022. doi: 10.1007/s40688-016-0109-7.
Child Welfare Gateway. Introduction to Adoption. https://www.childwelfare.gov/topics/adoption/intro/.
Chlebowski RT, Anderson GL, Manson JE, et al. Lung cancer among postmenopausal women treated with estrogen alone in the women’s health initiative randomized trial. JNCI : Journal of the National Cancer Institute. 2010;102(18):1413-1421. https://search.datacite.org/works/10.1093/jnci/djq285. doi: 10.1093/jnci/djq285.
—–Anderson G, Pettinger M, et al. Estrogen plus progestin and breast cancer detection by means of mammography and breast biopsy. Archives of internal medicine (1960). 2008;168(4):370-377. http://dx.doi.org/10.1001/archinternmed.2007.123. doi: 10.1001/archinternmed.2007.123.
—–Kuller LH, Prentice RL, et al. Breast cancer after use of estrogen plus progestin in postmenopausal women. The New England Journal of Medicine. 2009;360(6):573-587. https://search.datacite.org/works/10.1056/nejmoa0807684. doi: 10.1056/NEJMoa0807684.
—–Schwartz AG, Wakelee H, et al. Oestrogen plus progestin and lung cancer in postmenopausal women (women’s health initiative trial): A post-hoc analysis of a randomised controlled trial. The Lancet (British edition). 2009;374(9697):1243-1251. https://search.datacite.org/works/10.1016/s0140-6736(09)61526-9. doi: 10.1016/S0140-6736(09)61526-9.
Chotirmall SH, Smith SG, Gunaratnam C, et al. Effect of estrogen on pseudomonas mucoidy and exacerbations in cystic fibrosis. The New England journal of medicine. 2012;366(21):1978-1986. https://search.datacite.org/works/10.1056/nejmoa1106126. doi: 10.1056/nejmoa1106126.
Coakley RD, Sun H, Clunes LA, et al. 17β-estradiol inhibits Ca2+-dependent homeostasis of airway surface liquid volume in human cystic fibrosis airway epithelia. The Journal of clinical investigation. 2008;118(12):4025-4035. https://www.openaire.eu/search/publication?articleId=od_______267::fdb94aed5709d1417361b5f5754c668e. doi: 10.1172/JCI33893.
Columbia University. Thoracic surgery team at Columbia University. Resuming Life after Lung Transplantation. https://columbiasurgery.org/lung-transplant/resuming-life-after-lung-Transplantation. Website. Accessed 3.18.2020.
Coyne KS, Margolis MK, Jumadilova Z, Bavendam T, Mueller E. Overactive bladder and women’s sexual health: What is the impact? The Journal of Sexual Medicine. 2007;4(3):656-666. https://doi.org/10.1111/j.1743-6109.2007.00493.x.
Crowley T, Richardson D, Goldmeier D. Recommendations for the management of vaginismus: BASHH special interest group for sexual dysfunction. International Journal of STD & AIDS. 2006;17(1):14-18. http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=ovfth&NEWS=N&AN=00001604-200601000-00003. doi: 10.1258/095646206775220586.
Cunningham D. Darcy’s blog: How to talk to kids about cystic fibrosis. http://www.gunnaresiason.com/darcys-blog-talk-kids-cystic-fibrosis/. 2018.
Curtis KM, Jatlaoui TC, Tepper NK, et al. U.S. selected practice recommendations for contraceptive use, 2016. MMWR. Recommendations and reports. 2016;65(4):1-66. https://search.datacite.org/works/10.15585/mmwr.rr6504a1. doi: 10.15585/mmwr.rr6504a1.
—–Tepper NK, Jatlaoui TC, et al. U.S. medical eligibility criteria for contraceptive use, 2016. MMWR. Recommendations and reports. 2016;65(3):1-103. https://search.datacite.org/works/10.15585/mmwr.rr6503a1. doi: 10.15585/mmwr.rr6503a1.
Cyganek A, Pietrzak B, Wielgoś M, Grzechocińska B. Menopause in women with chronic immunosuppressive treatment – how to help those patients. Przegla̜d menopauzalny. 2016;15(1):1-5. https://www.ncbi.nlm.nih.gov/pubmed/27095951. doi: 10.5114/pm.2016.58765.
Cystic Fibrosis Canada. Sexuality, fertility and cystic fibrosis for adults. https://www.cysticfibrosis.ca/about-cf/living-with-cystic-fibrosis/adults/fertility.
Cystic Fibrosis Foundation. Pregnancy after transplant, pregnancy. and CF. https://www.cff.org/Life-With-CF/Transitions/Family-Planning-and-Parenting-
With-CF/Pregnancy-and-CF/Pregnancy-After-Transplant/. Accessed 6.25.2020.
—–How does CF affect the female reproductive system. https://www.cff.org/Life-With-CF/Transitions/Reproductive-Health-and-Fertility/
—–Depression, anxiety and cystic fibrosis – what the guidelines mean for you. https://www.cff.org/Living-with-CF/Emotional-Wellness/Depression-Anxiety-and-
Cystic-Fibrosis-What-the-Guidelines-Mean-for-You. Accessed 3.5.2020.
—–Adult guide to cystic fibrosis. n.d. https://www.cff.org/life-with-cf/daily-life/adult-guide-to-cf.pdf.
—–About cystic fibrosis. https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/. Updated 2016.
—–CFF Patient Registry 2016 Annual Data Report. 2017. https://www.cff.org/Research/Researcher-Resources/Patient-Registry/2016-Patient-Regis-try-Annual-Data-Report.pdf
—–2018 Patient Registry Annual Aata Report. 2019. https://www.cff.org/Research/Researcher-Resources/Patient-Registry/2018-Patient-Registry-Annual-Data-Report.pdf
Cystic Fibrosis Trust. A transplant booklet for people with CF. https://www.cysticfibrosis.org.uk/what-is-cystic-fibrosis/cystic-fibrosis-care/transplant-information-and-resources#Transplant%20booklets. Updated 2018. Accessed 2.20.2020.
—–Body image and cystic fibrosis booklet. https://www.cysticfibrosis.org.uk/what-is-cystic-fibrosis/how-does-cystic-fibrosis-affect-the-body/body-image. Updated 2019. Accessed 2.13.2020.
Darvish-Mofrad-Kashani Z, Emaratkar E, Hashem-Dabaghian F, et al. Effect of melissa officinalis (lemon balm) on sexual dysfunction in women: A double- blind, randomized, placebo-controlled study. Iranian journal of pharmaceutical research : IJPR. 2018;17(Suppl):89-100. https://www.ncbi.nlm.nih.gov/pubmed/29796033.
Davies JC, Li H, Yen K, Ahrens R. WS6.5 ivacaftor in subjects 6 to 11 years of age with cystic fibrosis and the G551D-CFTR mutation. Journal of Cystic Fibrosis. 2012;11:S13. https://www.clinicalkey.es/playcontent/1-s2.0-S1569199312600435. doi: 10.1016/S1569-1993(12)60043-5.
Davis LS. Puberty for the middle-aged. International New York Times. 11.22. 2018.
Divithotawela C, Chambers D, Hopkins P. Pregnancy after lung transplant: Case report. Breathe (Lausanne, Switzerland). 2015;11(4):291-295. https://www.ncbi.nlm.nih.gov/pubmed/27066122. doi: 10.1183/20734735.008915.
Edenborough FP, Borgo G, Knoop C, et al. Guidelines for the management of pregnancy in women with cystic fibrosis. Journal of cystic fibrosis. 2008;7(Suppl 1):S2-S32. https://search.datacite.org/works/10.1016/j.jcf.2007.10.001. doi: 10.1016/j.jcf.2007.10.001.
Vaughn E. Menopause can start younger than you think: Here’s what you need to know. Shots [BLOG] Website. https://search.proquest.com/docview/2342353757. Updated 2020.
Epelboin S, Hubert D, Patrat C, Abirached F, Bienvenu T, Lepercq J. Management of assisted reproductive technologies in women with cystic fibrosis. Fertility and sterility. 2001;76(6):1280-1281. http://dx.doi.org/10.1016/S0015-0282(01)02896-5. doi: 10.1016/S0015-0282(01)02896-5.
Fair A, Griffiths K, Osman LM. Attitudes to fertility issues among adults with cystic fibrosis in Scotland. Thorax. 2000;55(8):672-677. http://dx.doi.org/10.1136/thorax.55.8.672. doi: 10.1136/thorax.55.8.672.
Fait T. Menopause hormone therapy: Latest developments and clinical practice. Drugs in Context. 2019;8:1-9. https://search.datacite.org/works/10.7573/dic.212551. doi: 10.7573/dic.212551.
FDA. Mycophenolate risk evaluation mediation strategy. US food and drug administration website. https://www.fda.gov/drugs/postmarket-drug-safety-information-patients-and-providers/information-mycophenolate. Updated 2015. Accessed 1.2020.
Floto RA, Olivier KN, Saiman L, et al. US cystic fibrosis foundation and european cystic fibrosis society consensus recommendations for the management of non-tuberculous mycobacteria in individuals with cystic fibrosis. Thorax. 2016;71(Suppl 1):i1-i22. http://dx.doi.org/10.1136/thoraxjnl-2015-207360. doi: 10.1136/thoraxjnl-2015-207360.
Foo YZ, Nakagawa S, Rhodes G, Simmons LW. The effects of sex hormones on immune function: A meta-analysis. Biological reviews of the Cambridge Philosophical Society. 2017;92(1):551-571. https://search.datacite.org/works/10.1111/brv.12243. doi: 10.1111/brv.12243.
Frayman KB, MBBS, Sawyer SM, Prof. Sexual and reproductive health in cystic fibrosis: A life-course perspective. Lancet Respiratory Medicine, The. 2015;3(1):70-86. https://www.clinicalkey.es/playcontent/1-s2.0-S2213260014702310. doi: 10.1016/S2213-2600(14)70231-0.
—–Kazmerski TM, Sawyer SM. A systematic review of the prevalence and impact of urinary incontinence in cystic fibrosis. Respirology. 2018;23(1):46-54. https://onlinelibrary.wiley.com/doi/abs/10.1111/resp.13125. doi: 10.1111/resp.13125.
Gage LA. What deficits in sexual and reproductive health knowledge exist among women with cystic fibrosis? A systematic review. Health & Social Work. 2012;37(1):29-36. https://www.ncbi.nlm.nih.gov/pubmed/22908479. doi: 10.1093/hsw/hls003.
Gatiss S, Mansour D, Doe S, Bourke S. Provision of contraception services and advice for women with cystic fibrosis. Journal of Family Planning and Reproductive Health Care. 2009;35(3):157-160. http://dx.doi.org/10.1783/147118909788708075. doi: 10.1783/147118909788708075.
Geake J, Tay G, Callaway L, Bell SC. Pregnancy and cystic fibrosis: Approach to contemporary management. Obstetric Medicine. 2014;7(4):147-155. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4934991/. doi: 10.1177/1753495X14554022
Goddard J, Bourke SJ. Cystic fibrosis and pregnancy. The Obstetrician & Gynaecologist. 2009;11(1):19-24. https://doi.org/10.1576/toag.220.127.116.11464. doi: 10.1576/toag.18.104.22.168464.
Godfrey EM, Mody S, Schwartz MR, et al. Contraceptive use among women with cystic fibrosis: A pilot study linking reproductive health questions to the cystic fibrosis foundation national patient registry. Contraception. 2020;101(6):420-426 http://dx.doi.org/10.1016/j.contraception.2020.02.006. doi:10.1016/j.contraception.2020.02.006.
Goldsweig B, Kaminski B, Sidhaye A, Blackman SM, Kelly A. Puberty in cystic fibrosis. Journal of cystic fibrosis. 2019;18:S88-S94 https://search.datacite.org/works/10.1016/j.jcf.2019.08.013. doi:10.1016/j.jcf.2019.08.013.
Goss CH, Rubenfeld GD, Otto K, Aitken ML. The effect of pregnancy on survival in women with cystic fibrosis. Chest. 2003;124(4):1460-1468. https://search.datacite.org/works/10.1378/chest.124.4.1460. doi:10.1378/chest.124.4.1460.
Grigoriadis C, Tympa A, Theodoraki K. Cystic fibrosis and pregnancy: Counseling, obstetrical management and perinatal outcome. Investigación clínica. 2015;56(1):66. https://www.ncbi.nlm.nih.gov/pubmed/25920187.
Hailey CE, Tan JW, Dellon EP, Park EM. Pursuing parenthood with cystic fibrosis: Reproductive health and parenting concerns in individuals with cystic fibrosis. Pediatric pulmonology. 2019;54(8):1225-1233. https://search.datacite.org/works/10.1002/ppul.24344. doi:10.1002/ppul.24344.
Han MK, Arteaga-Solis E, Blenis J, et al. Female sex and gender in lung/sleep health and disease: Increased understanding of basic biological, pathophysiological, and behavioral mechanisms leading to better health for female patients with lung disease. American Journal of Respiratory and Critical Care Medicine. 2018;198(7):850-858. https://doi.org/10.1164/rccm.201801-0168ws. doi: 10.1164/rccm.201801-0168ws.
Hanna RM, Weiner DJ. Overweight and obesity in patients with cystic fibrosis: A center‐based analysis. Pediatric Pulmonology. 2015;50(1):35-41. https://onlinelibrary.wiley.com/doi/abs/10.1002/ppul.23033. doi: 10.1002/ppul.23033.
Harindhanavudhi, T., Wang, Q., Dunitz, J., Moran, A., & Moheet, A. (2020). Prevalence and factors associated with overweight and obesity in adults with cystic fibrosis: A single-center analysis. Journal of Cystic Fibrosis, 19(1), 139–145. https://doi.org/10.1016/j.jcf.2019.10.004. doi: 10.1016/j.jcf.2019.10.004
Harish T, Prasad MK, Murthy P. Successful management of vaginismus: An eclectic approach. Indian journal of psychiatry. 2012;54(4):391-392. https://www.ncbi.nlm.nih.gov/pubmed/23372252. doi: 10.4103/0019-5545.104845.
Harness-Brumley CL, Elliott AC, Rosenbluth DB, Raghavan D, Jain R. Gender differences in outcomes of patients with cystic fibrosis. Journal of Women’s Health (Larchmont, N.Y. 2002). 2014;23(12):112-1020. https://www.liebertpub.com/doi/abs/10.1089/jwh.2014.4985. doi:10.1089/jwh.2014.4985.
Harvard Health. The psychological impact of infertility and its treatment: from the Harvard Mental Health Letter. https://www.health.harvard.edu/newsletter_article/The-psychological-impact-of-infertility-and-its-treatment. Updated 2009.
Heiss G, Wallace R, Anderson GL, et al. Health risks and benefits 3 years after stopping randomized treatment with estrogen and progestin. JAMA : the journal of the American Medical Association. 2008;299(9):1036-1045. http://dx.doi.org/10.1001/jama.299.9.1036. doi: 10.1001/jama.299.9.1036.
Helms SW, Christon LM, Dellon EP, Prinstein MJ. Patient and provider perspectives on communication about body image with adolescents and young adults with cystic fibrosis. Journal of pediatric psychology. 2017;42(9):1040-1050. https://www.ncbi.nlm.nih.gov/pubmed/28369522. doi: 10.1093/jpepsy/jsx055.
Heltshe SL, Godfrey EM, Josephy T, Aitken ML, Taylor-Cousar JL. Pregnancy among cystic fibrosis women in the era of CFTR modulators. Journal of Cystic Fibrosis. 2017;16(6):687-694. https://www.clinicalkey.es/playcontent/1-s2.0-S1569199317300152. doi:10.1016/j.jcf.2017.01.008.
—–Taylor-Cousar JL. Let’s talk about sex: Behaviors, experience and health care utilization in young women with CF. Journal of cystic fibrosis. 2018;17(1):5-6. http://dx.doi.org/10.1016/j.jcf.2017.11.006. doi: 10.1016/j.jcf.2017.11.006.
Hendrix SL, Cochrane BB, Nygaard IE, et al. Effects of estrogen with and without progestin on urinary incontinence. JAMA : the journal of the American Medical Association. 2005;293(8):935-948. doi:10.1001/jama.293.8.935.
Hodges CA, Palmert MR, Drumm ML. Infertility in females with cystic fibrosis is multifactorial: Evidence from mouse models. Endocrinology. 2008;149(6):2790-2797. http://dx.doi.org/10.1210/en.2007-1581. doi: 10.1210/en.2007-1581.
Hogan AM, Collins D, Baird AW, Winter DC. Estrogen and its role in gastrointestinal health and disease. International journal of colorectal disease. 2009;24(12):1367-1375. https://www.ncbi.nlm.nih.gov/pubmed/19655153. doi:10.1007/s00384-009-0785-0.
Holton S, Fisher J, Button B, Williams E, Wilson J. Childbearing concerns, information needs and preferences of women with cystic fibrosis: An online discussion group. Sexual & reproductive healthcare. 2019;19:31-35. https://search.datacite.org/works/10.1016/j.srhc.2018.11.004. doi: 10.1016/j.srhc.2018.11.004.
Hope Center of Georgia. Photo of female sexual dysfunction. http://www.thehopecenterofgeorgia.com/standard-blog/female-sexual-dysfunction.
Hughan KS, Daley T, Rayas MS, Kelly A, Roe A. Female reproductive health in cystic fibrosis. Journal of cystic fibrosis. 2019;18:S95-S104. https://search.datacite.org/works/10.1016/j.jcf.2019.08.024. doi:10.1016/j.jcf.2019.08.024.
Hull SC, Kass NE. Adults with cystic fibrosis and (in)fertility: How has the healthcare system responded? Journal of Andrology. 2000;21(6):809-813. https://search.proquest.com/docview/72431862.
International Transplant Nurses Society. Lung transplant patient education booklet – A guide to your health care after lung transplantation. http://itns.org/education/patient-education. Updated 2019. Accessed 2.22.2020.
Jacob A, Journiac J, Fischer L, Astrologo L, Flahault C. How do cystic fibrosis patients experience parenthood? A systematic review. Journal of health psychology. 2020:135910532091653-1359105320916539. https://search.proquest.com/docview/2405304697. doi: 10.1177/1359105320916539.
Jain R, Sabanova V, Holtrop M, et al. Effects of sex hormones on markers of health in women with cystic fibrosis. Pediatric pulmonology. 2019:221.
Jelin AC, Sharshiner R, Caughey AB. Maternal co-morbidities and neonatal outcomes associated with cystic fibrosis. The Journal of Maternal-Fetal & Neonatal Medicine. 2017;30(1):4-7. http://www.tandfonline.com/doi/abs/10.3109/14767058.2016.1161747. doi: 10.3109/14767058.2016.1161747.
Jervis C. The FDA’s hesitation to approve ‘female sexual dysfunction’ drugs isn’t about sexism. The women’s health activist. 2015;40(2):4. https://search.proquest.com/docview/1672888597.
Jessup M, Li A, Fulbrook P, Bell SC. The experience of men and women with cystic fibrosis who have become a parent: A qualitative study. Journal of Clinical Nursing. 2018;27(7-8):1702-1712. https://onlinelibrary.wiley.com/doi/abs/10.1111/jocn.14229. doi:10.1111/jocn.14229.
Johannesson M, Carlson M, Brucefors AB, Hjelte L. Cystic fibrosis through a female perspective: Psychosocial issues and information concerning puberty and motherhood. Patient Education and Counseling. 1998;34(2):115-123. http://dx.doi.org/10.1016/S0738-3991(97)00087-6. doi: 10.1016/S0738-3991(97)00087-6.
—–Ludviksdottir D, Janson C. Lung function changes in relation to menstrual cycle in females with cystic fibrosis. Respiratory Medicine. 2000;94(11):1043. https://pubmed-ncbi-nlm-nih-gov.proxy.cc.uic.edu/11127489/. doi: 10.1053/rmed.2000.0891
Jones GH, Walshaw MJ. Potential impact on fertility of new systemic therapies for cystic fibrosis. Paediatric Respiratory Reviews. 2015;16:25-27. https://www.clinicalkey.es/playcontent/1-s2.0-S1526054215000676. doi:10.1016/j.prrv.2015.07.013.
Karlamangla, Arun S., PhD, MD, Burnett-Bowie, Sherri-Ann M., MD, MPH, Crandall, Carolyn J., MD, MS. Bone health during the menopause transition and beyond. Obstetrics and Gynecology Clinics. 2018;45(4):695-708. https://www.clinicalkey.es/playcontent/1-s2.0-S088985451830072X. doi: 10.1016/j.ogc.2018.07.012.
Katz S. Living life with cystic fibrosis ‘and’ being a parent. n.d. https://hhcs.com/living-life-with-cystic-fibrosis-and-being-a-parent/ Website.
Kazmerski, Traci M., MD, MS, Borrero, Sonya, MD, MS, Sawicki, Gregory S., MD, MPH, et al. Provider attitudes and practices toward sexual and reproductive health care for young women with cystic fibrosis. Journal of Pediatric and Adolescent Gynecology. 2017;30(5):546-552. https://www.clinicalkey.es/playcontent/1-s2.0-S1083318817300220. doi:10.1016/j.jpag.2017.01.009.
—–Sawicki GS, Miller E, et al. Sexual and reproductive health behaviors and experiences reported by young women with cystic fibrosis. Journal of Cystic Fibrosis. 2018;17(1):57-63. http://dx.doi.org/10.1016/j.jcf.2017.07.017. doi: 10.1016/j.jcf.2017.07.017.
—–Gmelin T, et al. Attitudes and decision making related to pregnancy among young women with cystic fibrosis. Matern Child Health J. 2017;21(4):818-824. https://www.ncbi.nlm.nih.gov/pubmed/27531009. doi: 10.1007/s10995-016-2181-z.
Kizilkaya Beji N, Yalcın O, Ayyildiz EH, Kayir A. Effect of urinary leakage on sexual function during sexual intercourse. Urologia Internationalis. 2005;74(3):250-255. https://www.karger.com/Article/Abstract/83558. doi: 10.1159/000083558.
Klages KL, Berlin KS, Silverman AH, et al. Empirically derived patterns of pain, stooling, and incontinence and their relations to health-related quality of life among youth with chronic constipation. Journal of pediatric psychology. 2017;42(3):325-334. https://www.ncbi.nlm.nih.gov/pubmed/27474732. doi: 10.1093/jpepsy/jsw068.
Kontula O, Miettinen A. Determinants of female sexual orgasms. Socioaffective neuroscience & psychology. 2016;6(1):31624-21. https://search.datacite.org/works/10.3402/snp.v6.31624. doi: 10.3402/snp.v6.31624.
Kroon MA, Akkerman-Nijland AM, Rottier BL, Koppelman GH, Akkerman OW, Touw DJ. Drugs during pregnancy and breast feeding in women diagnosed with cystic fibrosis – an update. Journal of Cystic Fibrosis. 2018;17(1):17-25. http://dx.doi.org/10.1016/j.jcf.2017.11.009. doi:10.1016/j.jcf.2017.11.009.
Ladores S, Bray LA, Meneses K. Fears surrounding pregnancy and motherhood among women with cystic fibrosis. Women’s Healthcare. 2018:26-30. http://www.npwomenshealthcare.com/fears-pregnancy-motherhood-cystic-fibrosis/ Accessed July 2020.
—–Raju D, Bray LA. Fertility and reproductive health implications of targeted therapeutics for cystic fibrosis. Reproductive system & sexual disorders current research. 2016;5(4). doi: 10.4172/2161-038X.1000194.
—–Bray, L., & Brown, J. (2020). Two Unanticipated Pregnancies While on Cystic Fibrosis Gene-Specific Drug Therapy. Journal of Patient Experience, 7(1), 4–7. https://pubmed-ncbi-nlm-nih-gov.proxy.cc.uic.edu/32128363/. doi: 10.1177/2374373519826556
Lau EMT, Barnes DJ, Moriarty C, et al. Pregnancy outcomes in the current era of cystic fibrosis care: A 15-year experience. Australian & New Zealand journal of obstetrics & gynaecology. 2011;51(3):220-224. https://doi.org/10.1111/j.1479-828x.2010.01287.x doi: 10.1111/j.1479-828X.2010.01287.x.
Levine SB, R C Stern RC. Sexual function in cystic fibrosis. relationship to overall health status and pulmonary disease severity in 30 married patients. Chest. 1982;81(4):422. https://doi.org/10.1378/chest.81.4.422. doi:10.1378/chest.81.4.422.
Litvin M, Yoon JC, Leey Casella J, Blackman SM, Brennan AL. Energy balance and obesity in individuals with cystic fibrosis. Journal of cystic fibrosis. 2019;18:S38-S47. http://dx.doi.org/10.1016/j.jcf.2019.08.015. doi: 10.1016/j.jcf.2019.08.015.
Liu M, Juravic M, Mazza G, Krychman ML. Vaginal dilators: Issues and answers. Sexual Medicine Reviews. 2020. http://dx.doi.org/10.1016/j.sxmr.2019.11.005. doi:10.1016/j.sxmr.2019.11.005.
Longo L, Speri A, Sartori G, Doro R. Preliminary results of a nurse-led study cystic fibrosis center of Veneto, Verona, Italy. Abstract. J Cystic Fibrosis. 2002;1:S81–S180.
Los Angeles IVF. USC Fertility. How does PGS work? – genetic screening . https://uscfertility.org/ivf/how-does-pgs-work/.
Lynn BK, López JD, Miller C, Thompson J, Campian EC. The Relationship between Marijuana Use Prior to Sex and Sexual Function in Women. Sex Med. 2019;7(2):192-197. doi:10.1016/j.esxm.2019.01.003
Maher MA, Sayyed TM, Elkhouly N. Cervical mucus removal prior to intrauterine insemination: A randomized trial. BJOG: An International Journal of Obstetrics & Gynaecology. 2018;125(7):841-847. https://onlinelibrary.wiley.com/doi/abs/10.1111/1471-0528.15003. doi: 10.1111/1471-0528.15003.
Mainz JG, Michl RK, Beiersdorf N, et al. Successful pregnancy of a patient with cystic fibrosis genotype F508del/ F508del and progressed pulmonary destruction on lumacaftor/ivacaftor. Klinische Pädiatrie. 2019;231(5):271-273. http://dx.doi.org/10.1055/a-0973-8565. doi:10.1055/a-0973-8565.
Mayo Clinic. Egg freezing. https://www.mayoclinic.org/tests-procedures/egg-freezing/about/pac-20384556. Updated 2.1.19.
—–Menopause: Symptoms and causes. https://www.mayoclinic.org/diseases-conditions/menopause/symptoms-causes/syc-20353397 Website. Accessed 9.23.2020.
McCleary N, Nwaru BI, Nurmatov UB, Critchley H, Sheikh A. Endogenous and exogenous sex steroid hormones in asthma and allergy in females: A systematic review and meta-analysis. Journal of allergy and clinical immunology. 2018;141(4):1510-1513.e8. https://search.datacite.org/works/10.1016/j.jaci.2017.11.034. doi:10.1016/j.jaci.2017.11.034.
McPheters JK, Sandberg JG. The relationship among couple relationship quality, physical functioning, and depression in multiple sclerosis patients and partners. Families, Systems, & Health. 2010;28(1):48-68. https://search.datacite.org/works/10.1037/a0018818. doi:10.1037/a0018818.
Michigan Medicine University of Michigan. Emotional recovery after lung transplant. http://www.med.umich.edu/pdf/lung-transplant/EmotionalRecovery. Updated 2018. Accessed 2.22.2020.
Mohd Mokhtar H, Giribabu N, Kassim N, Muniandy S, Salleh N. Testosterone decreases fluid and chloride secretions in the uterus of adult female rats via down-regulating cystic fibrosis transmembrane regulator (CFTR) expression and functional activity. J Steroid Biochem Mol Biol. 2014;144 Pt B:361-372. https://pubmed-ncbi-nlm-nih-gov.proxy.cc.uic.edu/25125390/. doi: S0960-0760(14)00186-1 [pii].
Mollaioli D, Di Sante S, Limoncin E, et al. Validation of a visual analogue scale to measure the subjective perception of orgasmic intensity in females: The orgasmometer-F. PloS one. 2018;13(8):e0202076. https://search.datacite.org/works/10.1371/journal.pone.0202076. doi: 10.1371/journal.pone.0202076.
Montemayor K, Franklin C, Dezube R, Lechtzin N, Sheffield J, West N. Maternal outcomes in pregnant women with cystic fibrosis. American J of Respiratory and Critical Care Medicine. 2019. doi:10.1164/ajrccm-conference.2019.199.1_meetingabstracts.a4331.
—–Claudio AT, Carson S, Lechtzin N, Christianson MS, West NE. Unmasking catamenial hemoptysis in the era of CFTR modulator therapy. Journal of cystic fibrosis. 2020;19(4):e25-e27. https://search.datacite.org/works/10.1016/j.jcf.2020.01.005. doi:10.1016/j.jcf.2020.01.005.
Moran A, Brunzell C, Cohen RC, et al. Clinical care guidelines for cystic fibrosis-related diabetes: A position statement of the american diabetes association and a clinical practice guideline of the cystic fibrosis foundation, endorsed by the pediatric endocrine society. Diabetes care. 2010;33(12):2697-2708. https://search.datacite.org/works/10.2337/dc10-1768. doi: 10.2337/dc10-1768.
CellCeptⓇ [package insert]. Roche Laboratories inc. Updated 2018. Accessed 1.2020.
Naehrlich L, Dörr H, Bagheri-Behrouzi A, Rauh M. Iodine deficiency and subclinical hypothyroidism are common in cystic fibrosis patients. Journal of Trace Elements in Medicine and Biology. 2013;27(2):122-125. http://dx.doi.org/10.1016/j.jtemb.2012.08.002. doi:10.1016/j.jtemb.2012.08.002.
Nagoski E. Come as you are. First Simon & Schuster trade paperback edition ed. New York, London, Toronto, Sydney, New Delhi: Simon & Schuster Paperbacks; 2015.
Nash EF, Middleton PG, Taylor-Cousar JL. Outcomes of pregnancy in women with cystic fibrosis (CF) taking CFTR modulators – an international survey. Journal of cystic fibrosis. 2020;19(4):521-526. http://dx.doi.org/10.1016/j.jcf.2020.02.018. doi:10.1016/j.jcf.2020.02.018.
National Cancer Institute. MHT fact sheet. https://www.cancer.gov/about-cancer/causes-prevention/risk/hormones/mht-fact-sheet. Website.
—–Anatomy of the vulva. https://visualsonline.cancer.gov/details.cfm?imageid=9472.
National Vulvodenia Association. The latest news, information and studies on vulvodynia. https://www.nva.org.
Newson LR. Best practice for HRT: Unpicking the evidence. The British journal of general practice : the journal of the Royal College of General Practitioners. 2016;66(653):597-598. https://search.proquest.com/docview/1844024861.
Nixon GM, Glazner JA, Martin JM, Sawyer SM. Female sexual health care in cystic fibrosis. Archives of Disease in Childhood. 2003;88(3):265-266. http://dx.doi.org/10.1136/adc.88.3.265. doi: 10.1136/adc.88.3.265.
Norris E, Phillips S, Butler C, James K. Sex and relationships education for individuals with cystic fibrosis: A service-based approach. Sex Disabil. 2018;36(4):363-376. https://search.datacite.org/works/10.1007/s11195-018-9535-y. doi: 10.1007/s11195-018-9535-y.
North American Menopause Society. Changes at midlife. https://www.menopause.org/for-women/sexual-health-menopause-online/changes-at-midlife.
Olesen HV, Drevinek P, Gulmans VA, et al. Cystic fibrosis related diabetes in europe: Prevalence, risk factors and outcome; olesen et al. Journal of cystic fibrosis. 2019;19(2):321-327. https://search.datacite.org/works/10.1016/j.jcf.2019.10.009. doi:10.1016/j.jcf.2019.10.009.
Orr A, McVean RJ, Webb AK, Dodd ME. Questionnaire survey of urinary incontinence in women with cystic fibrosis. BMJ. British medical journal (Clinical research ed.). 2001;322(7301):1521. https://www.ncbi.nlm.nih.gov/pubmed/11420273.
Parker CM, Nolan R, Lougheed MD. Catamenial hemoptysis and pneumothoraces in a patient with cystic fibrosis. Canadian respiratory journal. 2007;14(5):295-297. https://doi.org/10.1378/chest.81.4.422https://doi.org/10.1378/chest.81.4.422. doi:10.1155/2007/141028.
Patel EM, Swamy GK, Heine RP, Kuller JA, James AH, Grotegut CA. Medical and obstetric complications among pregnant women with cystic fibrosis. American Journal of Obstetrics and Gynecology. 2015;212(1):98.e1-98.e9. https://search.datacite.org/works/10.1016/j.ajog.2014.07.018. doi:10.1016/j.ajog.2014.07.018.
Perrissin-Fabert M, Stheneur C, Veilleux-Lemieux M, et al. Hormonal contraception effects on pulmonary function in adolescents with cystic fibrosis. Journal of pediatric & adolescent gynecology. 2020. http://dx.doi.org/10.1016/j.jpag.2020.07.014. doi:10.1016/j.jpag.2020.07.014.
Pfeffer PE, Pfeffer JM, Hodson ME. The psychosocial and psychiatric side of cystic fibrosis in adolescents and adults. Journal of Cystic Fibrosis. 2003;2(2):61-68. https://www-sciencedirect-com.proxy.cc.uic.edu/science/article/pii/S1569199303000201. doi:10.1016/S1569-1993(03)00020-1.
Depo provera [drug insert]. NY, NY: Pfizer inc.; Updated 2010. Accessed 1.2020.
Plant BJ, Goss CH, Tonelli MR, McDonald G, Black RA, Aitken ML. Contraceptive practices in women with cystic fibrosis. Journal of Cystic Fibrosis. 2008;7(5):412-414. https://www.clinicalkey.es/playcontent/1-s2.0-S1569199308000271. doi:10.1016/j.jcf.2008.03.001.
Quaas A, Dokras A. Diagnosis and treatment of unexplained infertility. Reviews in obstetrics and gynecology. 2008;1(2):69-76. https://www.ncbi.nlm.nih.gov/pubmed/18769664.
Quick VM, Byrd-Bredbenner C, Neumark-Sztainer D. Chronic illness and disordered eating: A discussion of the literature. Advances in nutrition (Bethesda, Md.). 2013;4(3):277-286. https://www.ncbi.nlm.nih.gov/pubmed/23674793. doi: 10.3945/an.112.003608.
Quittner AL, Goldbeck L, Abbott J, et al. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: Results of the international depression epidemiological study across nine countries. Thorax. 2014;69(12):1090-1097. https://search.datacite.org/works/10.1136/thoraxjnl-2014-205983. doi: 10.1136/thoraxjnl-2014-205983.
Rajagopal A, Sigua NL. Women and sleep. American journal of respiratory and critical care medicine. 2018;197(11):P19-P20. https://www.ncbi.nlm.nih.gov/pubmed/29856255. doi:10.1164/rccm.19711P19.
Ramsey BW, Downey GP, Goss CH. Update in cystic fibrosis 2018. American journal of respiratory and critical care medicine. 2019;199(10):1188-1194. https://www.ncbi.nlm.nih.gov/pubmed/30917288. doi: 10.1164/rccm.201902-0310UP.
Real FG, Svanes C, Omenaas ER, et al. Lung function, respiratory symptoms, and the menopausal transition. Journal of allergy and clinical immunology. 2008;121(1):72-80.e3. https://search.datacite.org/works/10.1016/j.jaci.2007.08.057. doi:10.1016/j.jaci.2007.08.057.
Renton M, Priestley L, Bennett L, Mackillop L, Chapman S. Pregnancy outcomes in cystic fibrosis: A 10-year experience from a UK centre. Obstetric Medicine. 2015;8(2):99-101. https://journals.sagepub.com/doi/full/10.1177/1753495X15575628. doi:10.1177/1753495X15575628.
Resolve: the National Infertility Association. Making decisions about remaining embryos. https://resolve.org/what-are-my-options/treatment-options/making-decisions-remaining-embryos/ Website.
—–The National Infertility Association. What is IUI? https://resolve.org/what-are-my-options/treatment-options/what-is-iui Website.
—–The National Infertility Association. Learn about genetic screening and testing information. https://resolve.org/what-are-my-options/treatment-options/genetic-screening-and-testing. Website.
Riedy C. Five tips for avoiding germs as a parent with CF. 6.6.2017. https://www.cff.org/CF-Community-Blog/Posts/2017/5-Tips-for-Avoiding-Germs-as-a-Parent-With-CF/.
Rodgers HC, Knox AJ, Toplis PJ, Thornton SJ. Successful pregnancy and birth after IVF in a woman with cystic fibrosis: Case report. Hum Reprod. 2000;15(10):2152-2153. https://pubmed-ncbi-nlm-nih-gov.proxy.cc.uic.edu/11006190/. doi:10.1093/humrep/15.10.2152.
Roe A. CF reproductive and sexual health collaborative Patient Task Force presentation on infertility (notes; not recorded). 4.14.2020.
—–Traxler SA, Hadjiliadis D, Sammel MD, Schreiber CA. Contraceptive choices and preferences in a cohort of women with cystic fibrosis. Respiratory Medicine. 2016;121:1-3. https://www.clinicalkey.es/playcontent/1-s2.0-S0954611116302657. doi:10.1016/j.rmed.2016.10.012.
—–Traxler S, Schreiber CA. Contraception in women with cystic fibrosis: A systematic review of the literature. Contraception. 2016;93(1):3-10. https://www.clinicalkey.es/playcontent/1-s2.0-S0010782415004801. doi: 10.1016/j.contraception.2015.07.007.
Rousset Jablonski C, Reynaud Q, Perceval M, et al. Contraceptive practices and cervical screening in women with cystic fibrosis. Human Reproduction. 2015;30(11):2547-2551. https://www.ncbi.nlm.nih.gov/pubmed/26345688. doi: 10.1093/humrep/dev217.
—–Reynaud Q, Perceval M, et al. Improvement in contraceptive coverage and gynecological care of adult women with cystic fibrosis following the implementation of an on-site gynecological consultation. Contraception (Stoneham). 2019;101(3):183-188. https://search.datacite.org/works/10.1016/j.contraception.2019.10.014. doi:10.1016/j.contraception.2019.10.014.
Saint-Criq V, Harvey BJ. Estrogen and the cystic fibrosis gender gap. Steroids. 2014;81:4-8. http://dx.doi.org/10.1016/j.steroids.2013.11.023. doi: 10.1016/j.steroids.2013.11.023.
Sanders DB, Bittner RCL, Rosenfeld M, Hoffman LR, Redding GJ, Goss CH. Failure to recover to baseline pulmonary function after cystic fibrosis pulmonary exacerbation. American journal of respiratory and critical care medicine. 2010;182(5):627-632. https://search.datacite.org/works/10.1164/rccm.200909-1421oc. doi:10.1164/rccm.200909-1421oc.
—–Ostrenga JS, Rosenfeld M, et al. Predictors of pulmonary exacerbation treatment in cystic fibrosis. Journal of cystic fibrosis. 2019;19(3):407-414. https://search.datacite.org/works/10.1016/j.jcf.2019.06.008. doi:10.1016/j.jcf.2019.06.008.
Santos-Longhurst A. Everything you need to know about female ejaculation. Healthline. 2019.
Sargant NN, Smallwood N, Finlay F. Sexual history taking: A dying skill? Journal of palliative medicine. 2014;17(7):829-831. https://www.liebertpub.com/doi/abs/10.1089/jpm.2013.0046. doi: 10.1089/jpm.2013.0046.
Sawyer SM, Phelan PD, Bowes G. Reproductive health in young women with cystic fibrosis: Knowledge, behavior and attitudes. Journal of adolescent health. 1995;17(1):46-50. http://dx.doi.org/10.1016/1054-139X(94)00096-W. doi:10.1016/1054-139X(94)00096-W.
Scaccia A. Everything you need to know about vaginal lubricants. Healthline. 2019.
Schechter MS, Quittner AL, Konstan MW, Millar SJ, Pasta DJ, McMullen A. Long-term effects of pregnancy and motherhood on disease outcomes of women with cystic fibrosis. Annals of the American Thoracic Society. 2013;10(3):213-219. https://search.datacite.org/works/10.1513/annalsats.201211-108oc. doi:10.1513/annalsats.201211-108oc.
Schmid-Mohler G, Caress A, Spirig R, Benden C, Yorke J. Patient-reported outcome measures for symptom perception during a cystic fibrosis exacerbation. Respiratory care. 2018;63(3):353-366. https://www.ncbi.nlm.nih.gov/pubmed/29317460. doi:10.4187/respcare.05638.
—–Caress A, Spirig R, Benden C, Yorke J. “Thrust out of normality”—How adults living with cystic fibrosis experience pulmonary exacerbations: A qualitative study. Journal of clinical nursing. 2018;28(1-2):190-200. https://search.datacite.org/works/10.1111/jocn.14646. doi: 10.1111/jocn.14646.
Schoyer KD, M.D, Gilbert F, M.D, Rosenwaks Z, M.D. Infertility and abnormal cervical mucus in two sisters who are compound heterozygotes for the cystic fibrosis (CF) ΔF508 and R117H/7T mutations. Fertility and Sterility. 2008;90(4):1201.e19-1201.e22. https://www.clinicalkey.es/playcontent/1-s2.0-S0015028207034565. doi:10.1016/j.fertnstert.2007.08.063.
Schreiber K. How toys impact relationships: Do they always increase satisfaction? Psychology Today. 5.27. 2017.
Schwarz BE, Pierce C, Walden CE, Knopp RH. Reference period analysis of vaginal bleeding with triphasic oral contraceptive agents containing norethindrone or levonorgestrel: A comparison study. International journal of fertility. 1992;37(3):176. https://www.ncbi.nlm.nih.gov/pubmed/1355765.
Shaner J, Coscia LA, Constantinescu S, et al. Pregnancy after lung transplant. Progress in transplantation (Aliso Viejo, Calif.). 2012;22(2):134-140. https://search.datacite.org/works/10.7182/pit2012285. doi: 10.7182/pit2012285.
Sheffield J. CFReSHC Patient Task Force meeting presentation on Pregnancy in women with CF. 5.14.2020.
Sheikh S, Zemel BS, Stallings VA, Rubenstein RC, Kelly A. Body composition and pulmonary function in cystic fibrosis. Frontiers in pediatrics. 2014;2:33. https://pubmed.ncbi.nlm.nih.gov/24783186/. doi: 10.3389/fped.2014.00033
Shiffman M. Teaching my kids about my CF. 1.13.2016. https://www.cff.org/CF-Community-Blog/Posts/2016/Teaching-My-Kids-
About-My-CF/ Website. Updated 2016.
Shumaker SA, Legault C, Kuller L, et al. Conjugated equine estrogens and incidence of probable dementia and mild cognitive impairment in postmenopausal women: Women’s health initiative memory study. JAMA : the journal of the American Medical Association. 2004;291(24):2947-2958. http://dx.doi.org/10.1001/jama.291.24.2947. doi:10.1001/jama.291.24.2947.
—–Legault C, Rapp SR, et al. Estrogen plus progestin and the incidence of dementia and mild cognitive impairment in postmenopausal women: The women’s health initiative memory study: A randomized controlled trial. JAMA : the journal of the American Medical Association. 2003;289(20):2651-2662. http://dx.doi.org/10.1001/jama.289.20.2651. doi:10.1001/jama.289.20.2651.
Simcox AM, Hewison J, Duff AJA, Morton AM, Conway SP. Decision‐making about pregnancy for women with cystic fibrosis. British Journal of Health Psychology; Br J Health Psychol. 2009;14(2):323-342. https://pubmed.ncbi.nlm.nih.gov/18718108/. doi:10.1348/135910708X332927.
Smylie J, MD MPH, Phillips-Beck W, RN MSc. Key points. Canadian Medical Association Journal. 2019;191(8):E207-E208. https://www.clinicalkey.es/playcontent/1-s2.0-S0820394619301038. doi: 10.1503/cmaj.190183.
Springer P. CFReSHC Patient Task Force meeting presentation on Sexual Function. 6.3.2020.
Stallings VA, Sainath N, Oberle M, Bertolaso C, Schall JI. Energy balance and mechanisms of weight gain with ivacaftor treatment of cystic fibrosis gating mutations. The Journal of pediatrics. 2018;201:229-237.e4. https://search.datacite.org/works/10.1016/j.jpeds.2018.05.018. doi:10.1016/j.jpeds.2018.05.018.
Sutton S, Rosenbluth D, Raghavan D, Zheng J, Jain R. Effects of puberty on cystic fibrosis related pulmonary exacerbations in women versus men. Pediatric Pulmonology. 2014;49(1):28-35. https://onlinelibrary.wiley.com/doi/abs/10.1002/ppul.22767. doi:10.1002/ppul.22767.
Tam A, Morrish D, Wadsworth S, Dorscheid D, Man SFP, Sin DD. The role of female hormones on lung function in chronic lung diseases. BMC women’s health. 2011;11(1):24. https://www.ncbi.nlm.nih.gov/pubmed/21639909. doi: 10.1186/1472-6874-11-24.
Taylor B. CFReSHC Patient Task Force meeting presentation on Incontinence and CF. 12.10.2019.
Techo E. NIH grant will examine fertility preservation counseling for women with cystic fibrosis. https://www.uab.edu/news/research/item/10610-nih-grant-will-examine-
fertility-preservation-counseling-for-women-with-cystic-fibrosis Website. Updated 2019.
Thakrar MV, MD, Morley K, RN, Lordan JL, MD, et al. Pregnancy after lung and heart-lung transplantation. Journal of Heart and Lung Transplantation. 2014;33(6):593-598. https://www.clinicalkey.es/playcontent/1-s2.0-S105324981400970X. doi:10.1016/j.healun.2014.02.008.
Thomas HN, Thurston RC. A biopsychosocial approach to women’s sexual function and dysfunction at midlife: A narrative review. Maturitas. 2016;87:49-60. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4808247/. doi:10.1016/j.maturitas.2016.02.0092.2016
Thorpe-Beeston J. Contraception and pregnancy in cystic fibrosis. Journal of the Royal Society of Medicine. 2009;102(1_suppl):3-10. https://journals.sagepub.com/doi/full/10.1258/jrsm.2009.s19002. doi:10.1258/jrsm.2009.s19002.
Traxler SA, Schreiber CA, Chavez V, Hadjiliadis D, Mollen C. Understanding how women with cystic fibrosis make decisions about family planning. Fertility and Sterility. 2015;104(3):e233. https://www.clinicalkey.es/playcontent/1-s2.0-S0015028215012376. doi:10.1016/j.fertnstert.2015.07.735.
—–Chavez V, Hadjiliadis D, Shea JA, Mollen C, Schreiber CA. Fertility considerations and attitudes about family planning among women with cystic fibrosis. Contraception (Stoneham). 2019;100(3):228-233. http://dx.doi.org/10.1016/j.contraception.2019.05.005. doi:10.1016/j.contraception.2019.05.005.
Triebner K, Matulonga B, Johannessen A, et al. Menopause is associated with accelerated lung function decline. American journal of respiratory and critical care medicine. 2017;195(8):1058-1065. https://search.datacite.org/works/10.1164/rccm.201605-0968oc. doi: 10.1164/rccm.201605-0968oc.
Troisi RJ, Speizer FE, Willett WC, Trichopoulos D, Rosner B. Menopause, postmenopausal estrogen preparations, and the risk of adult-onset asthma. A prospective cohort study. American journal of respiratory and critical care medicine. 1995;152(4 Pt 1):1183-1188. https://www.ncbi.nlm.nih.gov/pubmed/7551368. doi: 10.1164/ajrccm.152.4.7551368.
Trutnovsky G, Rojas RG, Mann KP, Dietz HP. Urinary incontinence: The role of menopause. Menopause. 2014;21(4):399-402. doi: 10.1097/GME.0b013e31829fc68c.
Tsang A. Perimenopause in CF: Assessment of onset and symptomatology. NACFC Annual Meeting. Anaheim. 10.6.2011.
Uchmanowicz I, Jankowska-Polan ́ska B, Rosin ́czuk J, Wleklik M. Health related quality of life of patients suffer-ing from cystic fibrosis. Adv Clin Exp Med. 2015;24(1):147-152.
Ullrich G, Bobis I, Bewig B. Perceived impact of motherhood on adherence to therapy in mothers with cystic fibrosis. Pneumologie. 2015;69(11):673-679. http://dx.doi.org/10.1055/s-0034-1392957. doi: 10.1055/s-0034-1392957.
—–Bobis I, Bewig B. Parenting stress in mothers with cystic fibrosis. Disability and rehabilitation. 2015;38(2):174-179. https://search.datacite.org/works/10.3109/09638288.2015.1031290. doi:10.3109/09638288.2015.1031290.
Vander Schaaff S. For gen-X women, grappling with the anxiety and sleepless nights of midlife angst. Washington Post.com. 2.7. 2020. Available from: https://global.factiva.com/en/du/article.asp?accessionno=WPCOM00020200208eg27002pa.
OrkambiⓇ [package insert]. Boston, MA: Vertex Pharmaceuticals; Updated 2015. Accessed 1.2020.
—–Trikafta [package insert]. Boston, MA: Vertex Pharmaceuticals; Updated 2019. Accessed 1.2020.
Vidaillac C, Yong VFL, Jaggi TK, Soh M, Chotirmall SH. Gender differences in bronchiectasis: A real issue? Breathe. 2018;14(2):108-121. https://search.datacite.org/works/10.1183/20734735.000218. doi:10.1183/20734735.000218.
Vieira-Baptista P, Lima-Silva J, Pérez-López FR, Preti M, Bornstein J. Vulvodynia: A disease commonly hidden in plain sight. Case reports in women’s health. 2018;20:e00079. https://search.datacite.org/works/10.1016/j.crwh.2018.e00079. doi: 10.1016/j.crwh.2018.e00079.
Von Berg K. CFReSHC Patient Task Force meeting Presentation on Incontinence and Cystic Fibrosis. 5.30.2018.
Watson R. Diet and exercise in cystic fibrosis. http://www.sciencedirect.com/science/book/9780128000519. Updated 2015.
Weinberger N, Kersting A, Riedel-Heller SG, Luck-Sikorski C. Body dissatisfaction in individuals with obesity compared to normal-weight individuals: A systematic review and meta-analysis. Obesity facts. 2016;9(6):424-441. https://search.datacite.org/works/10.1159/000454837. doi: 10.1159/000454837.
Wendt E, Hildingh C, Lidell E, Westerståhl A, Baigi A, Marklund B. Young women’s sexual health and their views on dialogue with health professionals. Acta Obstetricia et Gynecologica Scandinavica. 2007;86(5):590-595. https://onlinelibrary.wiley.com/doi/abs/10.1080/00016340701214035. doi:10.1080/00016340701214035.
Whiteman MK, Oduyebo T, Zapata LB, Walker S, Curtis KM. Contraceptive safety among women with cystic fibrosis: A systematic review. Contraception. 2016;94(6):621-629. https://www.clinicalkey.es/playcontent/1-s2.0-S0010782416301159. doi:10.1016/j.contraception.2016.05.016.
Whitworth J. Talking to my child about CF (part I). https://cystic-fibrosis.com/living/explain-cf-child/. Website. Updated 2019.
Wilson C. Effects of oestradiol on CF exacerbations in women. Nature reviews. Endocrinology. 2012;8(8):448. doi: 10.1038/nrendo.2012.98.
Women’s Health Initiative Study Group. Design of the women’s health initiative clinical trial and observational study. Control Clin Trials. 1998;19(1):61-109. http://www.sciencedirect.com.proxy.cc.uic.edu/science/article/pii/S0197245697000780. doi: 10.1016/S0197-2456(97)00078-0.
Writing Group for the Women’s Health Initiative Investigators. Risks and benefits of estrogen plus progestin in healthy postmenopausal women: Principal results from the women’s health initiative randomized controlled trial. JAMA : the journal of the American Medical Association. 2002;288(3):321-333. http://dx.doi.org/10.1001/jama.288.3.321. doi:10.1001/jama.288.3.321.
Zeitlin PL. Cystic fibrosis and estrogens: A perfect storm. The Journal of clinical investigation. 2008;118(12):3841-3844. https://www.ncbi.nlm.nih.gov/pubmed/19033654. doi: 10.1172/JCI37778.
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