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Volume 11 April/May 2019
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CFReSHC Newsletter!

Thank you for taking a few minutes to keep up to date on our activities.
Did you miss last month's newsletter?  Find it HERE.

Governance Board Updates
We are pleased to welcome a new member to the CFReSHC Governance Board. Megan Lepore is a patient partner and currently serves as a Deputy Division Director at the Centers for Medicare & Medicaid Services. Megan has worked in healthcare policy on the federal level for almost ten years. She also performed a rotation as a Presidential Management Fellow at the National Institute of Child Health and Human Development at NIH. Megan will use her expertise working on the Group Norms and Governance Subcommittee.  The Governance Board plans to fill the remaining two open positions from members who stepped down soon.
 
During the April meeting, members discussed activities related to our two active grants, such as finalizing the PCOR training program to share with participating PTF members. Clinicians and patient partners are submitting abstracts to various conferences but have yet to hear back on acceptance.  Members are actively submitting letters of intent and grant proposals based on the feedback of Patient Task Force Members.  CFReSHC talked about more outreach through local CF chapters and discussed the process of how to become a nonprofit.  In addition, CFReSHC has a general fund at the University of Washington, a non-profit, for fundraising purposes.
 
In May, the Governance Sub-Committee introduced ground rules to enhance virtual meetings. Members discussed upcoming conferences that CFReSHC members will attend and present at.  For example, Traci Kazmerski, CFReSCH GB and RAP member, will present and CFReSHC will have a table at the annual CFRI conference in July.
 
The new CReSHC website is live at: www.CFReSHC.org.  Please take a look and offer feedback: what would you like to see added about our collaborative.  CFReSHC plans to put a form on the website allowing researchers to collaborate with CFReSHC on their CF-SRH projects.  
It is important to note that the Patient Centered Outcomes Research Institute (PCORI), who funds our Eugene Washington Award, is up for budget re-authorization.  If PCORI loses their funding, it will be detrimental to the organization moving forward and its ability to provide funding opportunities for projects like ours.  For more information please visit: https://reauthorizepcori.org/.
Dr. Sheila Mody, Family Planning Specialist, recommended women watch this short video during her presentation to promote shared decision making with your women's health care provider.
ICYMI: Dr. Patricia Walker discussed the importance of patients developing a CF-Sexual & Reproductive Health (CF-SRH) guide for providers. Click the picture to watch the presentation.
May PTF Meeting Overview
On May 18, we discussed "Creating A Sexual and Reproductive Health Guide For Providers." Dr. Patricia Walker, Pulmonologist and Director of Mount Sinai Beth Israel's Cystic Fibrosis Center, shared her ideas for a guide designed by women with CF for CF clinicians and women's health care providers. The goal of the guide is to enable women and their providers to engage in conversations about the unique sexual and reproductive health issues faced by women with CF. 

Our break out groups focused on what SRH topics need to be included in a guide from the perspective of patients and providers. Some questions to consider with the guide include: What should you tell your provider about your sexual and reproductive health (SRH)?  And specifically, which provider do you discuss your SRH issues with: your CF care team or your women's health provider? What questions should your provider ask you? What questions should you ask your provider?  What research has been conducted on the topic? What research needs to be conducted? What treatment methods are established? We need input from PTF members to help design and develop the guide as part of our next CFF Impact Award grant.  We will set up work groups to enable members of the PTF to conduct SRH research and write on selected topics. Look for more information on how you can participate.
 
PTF members were asked to select the top sexual health topics to cover in the guide:
(PTF members: If you have not yet taken the survey, click here as we want your input) 
  1. Hormonal influences on CF symptoms
  2. Vaginal Health
  3. Contraception
  4. Modulators and SRH
  5. Menopause
  6. Mental Health
  7. Sexual Function
  8. Nutrition/Body Composition/Body Image
  9. Pregnancy
  10. Care coordination
ICYMI: On April 4, 2019, Drs. Emily Godfrey and Sheila Mody provided a presentation on "Creating A Relationship With Your Women's Health Care Provider." Click picture to view the recording of the presentation.
April PTF Meeting Overview

On April 4, 2019, Drs. Emily Godfrey and Sheila Mody discussed techniques to build a relationship with your women's health provider. First and foremost, it is acceptable and important to interview your provider. Be sure to ask upfront: How much do you know about CF? This will enable you to make an educated decision when it comes to selecting a provider that meets your needs. Second, state your goals for the visit. It is important to say: I want to discuss (fill in the blank) and have your provider address that concern. To illustrate this, Sheila provided a short video that demonstrates the importance of shared-decision making in a patient-centered medical appointment. Third, your provider should address the unique issues faced by women with CF. For example, try to find a high risk Obstetrician if you are pregnant and work with a genetic counselor or get preconception counseling prior to pregnancy.

Emily shared some of her findings on contraception and CF patients. She previously worked for the CDC and was tasked with researching the safety of various forms of contraception for women with CF.  She was dismayed when one study she found only included two CF patients. Emily stressed the importance of your provider understanding the complexity of prescribing the correct contraception for the CF patient. She feels that providers should tailor the type of contraception to your specific symptoms.

Many women in the break out sessions discussed the difficulty they have faced in finding a women's health provider. Many found providers unaware of the unique issues faced by women with CF or providers or unwilling to accept a patient with CF. Other women voiced frustration with finding a provider who was interested in issues beyond reproduction. Participants wished providers knew more about: cervical mucus, CF infertility issues, and that CF affects our sexual health and sex lives.

Patient Task Force Leadership Committee

CFReSHC voted to create a Patient Task Force-Leadership committee (PTF-LC). The purpose of a PTF-LC is to promote increased engagement of PTF members who are willing to volunteer their time in meaningful CFReSHC activities that go beyond attending monthly PTF meetings. The PTF-LC ensures that CFReSHC is optimally executing PCOR principles in its work, from project priorities, questions, design to implementation and dissemination. Given that PTF members have a variety of skills, expertise and time availability, the PTF-LC is a mechanism to harness the talents of the women with CF to better execute CFReSHC activities.  The GB invited five PTF members to join the committee including: Linda Bowman, Eliza Callard, Jen Kyle, and Luisa Palazola.  These members will: help with CReSHC recruitment, help locate funding opportunities, report PTF meeting findings at RAP meetings, assist with grant writing tasks, participate in subcommittees and work groups and serve as proxies at GB meetings.

Welcome to the new committee members!! They bring enthusiasm and invaluable experience in event organization, grant writing, fundraising and group management.

Research Advisory Panel Updates
The RAP met in May to review PTF meeting findings and to discuss ongoing projects. Here are the prioritized research questions from the three of the Patient Task Force Meetings: 
 

Feb 2019 - Vaginal health and STI  (n=25)
  • (19) How is vaginal flora different for women with CF?  What is the relationship between candida and antibiotics?
  • (15) What is the prevalence of STI/vaginitis/yeast infections in CF patients?  What are the most effective treatments?
  • (11) What training is needed for CF care providers to help women with lifestyle factors related to vaginal yeast infections?
  • (9) What are the barriers to discussing concerns about sexual infections in CF clinic?
March 2019  Nutrition and Body Composition in CF  (n=14)
  • (10) What does a healthy diet look like for people with CF?
  • (7) What pancreatic/gastric issues and food intolerances and allergies are related to CF?
  • (6) Should we be using BMI as a measuring tool or body composition? Body comp is measured during DEXA scan and measures density of tissue, bone, fat vs. muscle whereas BMi just measures weight/height.
  • (6) How can  CF care providers/social workers help CF patients with body dysmorphia for  those who are underweight or overweight?
April 2019 Creating a relationship with a women’s health care provider. (n=23)
  • (14) How can we get our gynecologist to coordinate with our CF doctor, especially if they are part of a different EMR system?
  • (12) What if we received ob/ gyn care in our CF clinic?
  • (12) How do we educate SRH providers about CF?
  • (11) How do we get CF doctors to see us as sexual beings who have sex and have needs and questions about sexual health, pregnancy and fertility?
  • (11) create a guide about CF for women to take to SRH providers
Attendees discussed potential future topics of interest to PTF members which included: Pain (June PTF focus topic), sexual function, fetal loss--miscarriage and abortion, diabetes and female hormones, sinus issues related to hormone changes, genetic and prenatal testing, bone health, and breast health.

Members reviewed work group progress. They discussed the reproductive decision aid tool, hormones, care coordination, menopause, incontinence and body image work group meeting schedule and ongoing and pending projects.  While there is no team lead for the body image work group, we hope to find one soon.
Grant Updates
Members of CFReSHC are working on a variety of grants and/or grant applications. Our goal is to remain current on presenting grant status updates and research findings to better inform our members about ongoing CFReSHC research activities. 

PCORI Eugene Washington Grant is actively working on the "PCOR Training Program"

For the last few months, the EWA team has been developing our patient-centered outcomes research (PCOR) training program for the CF community. We used information and feedback obtained through our needs assessment survey and discussion sessions to ensure that the training program addresses content relevant and meaningful to the CF community. With the assistance of a curriculum development tool provided by the University of Washington Institute of Translational Health Sciences, we created several core competencies for two distinct learner groups. Patient- and caregiver-partner participants will learn the following competencies: 1) understand the principles of research, 2) understand the science of PCOR, and 3) understand how to participate in and maintain a PCOR team. Researcher- and healthcare provider-partners will learn the following competencies: 1) understand the science of PCOR, 2) understand how to participate in and maintain a PCOR team, and 3)understand how to design and implement a PCOR study. Each competency will be addressed in one training session. All learners will train together for two competencies and separately for one learner-group specific competency. 

To date, the EWA team has developed and piloted two training sessions: 1) understanding the principles of research (patient/caregiver-partners only), and 2) understanding the science of PCOR (all partners). The training involved over 25 patient/provider participants. We are in the process of developing the final two training sessions (July and Sept) and will use the feedback from the pilot testing to  improve the program.

CFF Impact Grant
The Impact Award team held their May monthly PTF meeting to discuss writing a CF-SRH guide for patients and providers. This project will be submitted to the CF Foundation in June for the Impact Award.  Meeting attendees discussed what format the guide would take, how long the guide should be, and how to organize it. We decided the guide should be housed on our website but also provided in hard copy for patient and provider access.  Members felt that the guide should be broken up in to life phases to better direct conversations. The guide will be written by patients for patients, CF health providers and will also be given to women’s health providers to help address CF-SRH issues in the clinic setting. The IA team plans to apply for additional funding to compensate patient partners who work on the project.

Our June PTF Meeting on CF-SRH pain will take place June 14th. The IA team is assembling a panel of patients who each experience different types of CF-SRH pain to share their experiences. Panelist include women who experience pain during sex and endometriosis pain. If you are interested in being a part of our panel discussion, please contact Molly Pam at info@CFReSHC.org. The IA team will resume PTF meetings in the fall.
Please join our June PTF Meeting on June 14, 2019 from 2-4 pm EST. 
RSVP's requested but not required.  


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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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