Volume 7 Nov 2018
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CFReSHC Newsletter!

Thank you for taking a few minutes to see what we have been up to!

Governance Board Updates
The GB reviewed the results from the PCORI Needs Assessment survey.  The nearly 200 participants included people with CF, caregivers, psychologists, physicians, researchers, research coordinators, respiratory therapists, social workers, nurses and dietitians.  While most healthcare providers and nearly half of caregivers and CF patients were aware of patient-centered outcomes research, very few have participated in this type of research.  All of the patients/caregivers and most of the providers/researchers were interested in participating in this type of research.

Researchers found the following topics important:   
  • How to partner with patients and caregivers
  • How to design a patient-engaged research study
  • How to identify and select research topics that matter to patients

All of the patients/caregivers thought the following topics were extremely important or important to learn about before participating in patient-engaged research:

  • How to share their expertise on a research team throughout the research process
  • How to partner, build trust and have open communication with researchers and providers
  • The time commitment required 

"I guess I was assuming there would be a lot of things different from CF and Non CF menopausal women...I did learn a few new things, from both CF and Non CF aspects of menopause. ."  
Watch "Menopause, Aging and CF~Imagine that" presented by Health Educator, Laura Mentch, Ed.M.
Join us January 3, 2019 from 5-7 pm EST (4-6 CST, 3-5 MT, 2-4 PST) when Jennifer L. Taylor-Cousar MD, MSCS, ATSF discusses what is know about the reproductive and sexual health for women taking modulators. Bring your questions and share your experiences to help guide research in this area.  
ICYMI: Health educator and CFReSHC Board Member  Laura Mentch discussed Aging & Menopause.  
PTF Meeting Overview
Health educator and CFReSHC Governance Board Member Laura Mentch, Ed.M., discussed "Menopause, Aging and CF~Imagine That" on December 10, 2018.  Laura shared the GOOD NEWS:  WE ARE AGING!!!  However, on the opposite side of that is the fact that WE ARE AGING and experiencing all that comes with the "change" or menopause.  The biggest question women with CF face is: are the symptoms CF related, aging related or both.  Laura's presentation offered an overview of hormones and changes of the menstrual cycle before and after menopause, discussed the physical changes of the menopause transition and provided practical information to meet some of the challenges faced during menopause. Some perimenopausal and menopausal changes patients should be aware of include: anemia, colon and breast cancers,  an increase incidence of CFRD, changes in heart, bone, dental and mental health and vision changes like the need for glasses and glaucoma.  

Symptoms to look for as we age: 
  • menstrual changes 

  • hot flashes

  • night sweats

  • Osteoporosis

  • genito-urinary and breast changes

  • sexual function changes

  • incontinence

  • mood changes, depression

  • memory

One of the questions PTF attendees discussed was whether to talk about these changes with their CF team or with their ob/gyn physician.  

Laura mentioned that only a few research studies have focused on Menopause and CF.  She highlighted research results of patients surveyed in 2010:
  • 33/65 woman over age 30 yrs completed questionnaire & menopause rating scale
  • CF women experienced perimenopausal symptoms at a younger age than non CF women  (37.8 yrs vs 41yrs)

  • CF women reached menopause at a younger age than non CF women  (47.8 yrs vs 51 yrs )

  • Sleep disturbance and depression were most common symptoms

  • 10/26 women with CF who were perimenopausal reported increased respiratory symptoms

Voting members selected these three priority areas for further investigation:
  • Is osteopenia/osteoporosis related to menopause or CF or both (interaction)? 
  • What are the effects of modulators upon CF symptoms of aging (osteoporosis, sleep disorders, GI symptoms with menopause, etc.)
  • What should women with CF consider and talk to their CF team about as they age with CF?


PCORI and NAPCRG Conferences by Sandy Sufian
Emily and Sandy in front of their poster at the PCORI Annual Meeting in Washington, D.C.
CFReSHC co-founders, Emily Godfrey and Sandy Sufian, presented a poster at the Patient Centered Outcomes Research Institute (PCORI) Annual Meeting in Washington DC in October 2018.  The duo also presented at the North American Primary Care Research Group Meeting (NAPCRG) in Chicago in November 2018.

The poster, entitled “What Matters? Generating Patient-Centered research questions to improve sexual and reproductive health for women with Cystic Fibrosis,” covered the structure of CFReSHC and highlighted some of the research questions PTF members identified during the past two years of meetings.  At NAPCRG, Emily and Sandy jointly presented “Patient-generated Research Questions to Improve Sexual Reproductive Health Care for Women with Cystic Fibrosis.” They offered a brief overview of how CFReSHC emerged, its goals, its structure, and its methods for PTF and RAP meetings. They shared the concerns that emerged during past PTF meetings and  commented on the way these issues impact women’s lives. The presentation also highlighted the grants received by CFReSHC for 2018-2019 and mentioned how future projects will directly respond to reflect women with CF’s SRH priorities. While the presentation was part of a session on patient-engaged research, ironically Emily and Sandy were the only research pair that included a patient partner.

Feedback prompted interesting exchanges between the presenters and participants. Attendees wondered if our virtual meetings were easier to run because of the CF community’s history of listservs, virtual mini-cons and other social media outlets. Many were pleased to learn that the PTF will be developing an education guide for patients to educate their providers on CF-SRH concerns. Others praised our organizational structure for consistently engaging women with CF and for covering a variety of focus topics. 

Sandy was recently elected to PCORI’s Patient Engagement Advisory Panel. During the conference, she attended a one day workshop and a dinner. This panel is made up of patient-partners, industry representatives (pharma), clinicians and researchers doing work in their respective communities, including celiac disease, opioid addiction, immigrant health, and other chronic disease conditions.

Emily is active in PaCE, the Patient and Clinician Engagement group.  At NAPCRG, Emily and Sandy attended a one day PaCE workshop that covered a variety of projects. Interestingly, many attendees remembered Emily’s and Sandy’s presentation from last year in Montreal at the same workshop.
CFReSHC Member News

Godfrey EM, Mody S, Gilmore KC, Schwartz M, Taylor-Cousar JL, Jain R, Aitken ML, Heltshe S, Sufian S. Contraception, pregnancy and modulator use among reproductive-aged women with cystic fibrosis. Pediatric pulmonology 2018;53:420-.


Kazmerski TM, Ladores SL, Jain R, Mody S, Pam M, Brown G, Sufian S, Mentch L, Berhalter LT, Gilmore KC, Godfrey EM. THE CYSTIC FIBROSIS REPRODUCTIVE & SEXUAL HEALTH COLLABORATIVE: NEXT STEPS IN BUILDING A SUSTAINABLE PARTNERSHIP. Pediatric pulmonology 2018;53:412-.

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Cystic Fibrosis Reproductive and Sexual Health Collaborative · 1959 NE Pacific St · Box 356460 · Seattle, Washington 98195 · USA

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