Volume 3 March 2018
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The Cystic Fibrosis Reproductive and Sexual Health Collaborative

CFReSHC Newsletter!

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

Governance Board Updates
The Governance Board (GB) met on March 9, 2018 with seven members present.  Previously, the group opted to begin using Slack to help email management.  Some members were part of a trial period and found the format helpful for internal communications.  As a result, a tutorial was provided for all members during the meeting so that everyone could set up an account and begin using the format. 
Subcommittee updates--Communications, Meeting Planning and Group Norms--were next on the agenda.

The Communications committee is going to develop a poll soliciting feedback on the CFReSHC newsletter.  The committee chair is also helping to streamline the agenda and note taking responsibilities with a new format.  The group is hoping the new agenda format will help save time on producing meeting notes and to help those who did not attend better understand what occurred during the meeting to get up to speed on CFReSHC activities.     

The Meeting Planning committee reminded the group about all upcoming meetings already scheduled.  Then the group discussed ideas for the April RAP meeting.  Since the CFReSHC is taking part in the Cystic Fibrosis Foundation Minicon in April focusing on Sexual and Reproductive Health issues for people with CF, the group discussed possibly having a PTF after party meeting late in April.  They also mentioned having ice breakers at the beginning of meetings and compensation for facilitators and note takers during PTF meetings.

During the February meeting, the Group Norms worked on amendments to the CFReSHC governance document and members voted to support those items.  However, with varied schedules, the remaining pending items were placed on the back burner.  The focus of the committee going forward will be to finalize the governance document and to develop an on-boarding process for new members. 
The group then discussed the Stakeholder Engagement plan required under PCORI Tier II requirements.  CFReSHC works with numerous CF organizations that help with networking opportunities, advertising our meetings and providing funding options.

Finally, the group discussed if other groups could join our collaborative.  However, at this time we will continue focusing just on issues experienced by adult women with CF.  

March Patient Task Force Summary
Leigh Ann Bray discussed "Health-Related Quality of Life and Body Image in Adults with Cystic Fibrosis," on March 28, 2018 with 11 PTF members in attendance.  The session provided a wealth of information on a topic not often discussed by women with CF or even at routine CF clinic visits.  Here are some of the highlights. 
  • Coping and Health in CF Adults questionnaire was submitted to 123 participants  to better understand gender differences and perceptions of quality of life.  Then 30 post interviews of 15 men and 15 women were conducted.
  • Females report lower quality of life but males have poorer body image.  
  • Negative body images increases anxiety and depression.
  • Women discussed med (steroids, orkambi) use as causing gain weight that affected body image along with GI issues causing bloating or bigger stomach.
  • A third of the sample were overweight; overweight patients had worse body image.  
  • Men see scars as a negative; women see scars as an accomplishment.
  • Sometimes partners/spouses help more with body image issues.

After the meeting, 28 PTF members took a survey indicating their top three body image topics.  Here are the top three topics submitted to the Research Advisory Panel:  

1. What interventions can help women with CF who struggle with body image?
2. In what ways do CF care providers influence body image for CF women?
3. How do issues other than weight
like: barrel chest, large rib cage, skin issues, and finger clubbing affect the body image of women with CF?

Talking about these issues is the first step to making positive changes.  Thanks to everyone who participated by sharing their insights and personal stories.

Research Advisory Panel Updates
The goal of the Research Advisory Panel (RAP) is to formulate research questions based on the feedback provided from the Patient Task Force meetings.  On April 2, the RAP met to discuss the survey results from the Body Image session provided by Leigh Ann Bray.  Ms. Bray attended the meeting to give a brief overview of the CF Quality of Life research she is conducting for her doctoral thesis.  Here are some of the factors the group considered:
  • What is the role of antidepressants in body image and CF?

  • What are the barriers for providers to discuss body image? Clinic time? Lack of knowledge? 

  • Who should be in charge of bringing up the topic? Physician or nutritionist?

  • What should be used as a measurement?  BMI? Muscle Mass?

After the general discussion, members formulated specific questions based on the responses given by PTF members.  These questions included: 

  • How do women with CF deal with the conflict between their health status/lung functions and the social pressure to be fit/skinny? 

  • How do women feel their body image affects their sexuality/attractiveness to others?

  • Can we put together an interdisciplinary study around a larger theme like exercise by having a physical therapist, nutritionist, clinician, social worker, and patient each submit a question?

  • Can we incorporate the value of fitness in lung function instead of BMI? If someone is more physically fit, do they have fewer exacerbations even if they have low BMI?

  • How do patients respond to BMI discussion with CF providers?

CFReSHC's goal is to work with researchers to better assess the needs of the CF community to direct research in areas most requested and needed by the patient's themselves. 

Adult women with CF are invited to join the upcoming
CFReSHC Patient Task Force Meeting!

If you leak urine when you cough, sneeze, laugh hard or do PFT's, you are not alone. 
Join us to learn more:  May 30, 2018 7-9 pm EST
TOPIC: Incontinence   
PRESENTER: Physical Therapist Karen Von Berg
After the presentation we will break into small groups to discuss the topic.

Email us at to get log in details. 
RSVP's appreciated but not required.
Funding the Future of CFReSHC
The members of the Governance Board have been actively pursuing funding options for the future of CFReSHC.  Of the two Letters of Intent submitted in January, one was selected for proposal submission. 

The Eugene Washington Grant committee, which included three patient partners new to grant writing, worked expeditiously to submit the grant for approval, first by the University of Washington and second by the Patient-Centered Outcomes Research Institute (PCORI).  It will take about 2 months to learn if our application will be funded.

Everyone at CFReSHC remains committed to seeking new funding sources to maintain CFReSHC from July 2018 onward.  We plan to submit applications to other funding sources, including the Cystic Fibrosis Foundation by June.  Additionally, there are grants options with Fall deadlines.  

In the event we do not find funding by July 2018, we may need to proceed by working on a volunteer basis (no compensation) with potentially fewer PTF meetings.  We are committed to providing a supportive environment for women with CF to talk about issues not often discussed in general, much less at clinic.  Your continued support and participation is greatly appreciated as we navigate funding options and promote research shaped by your invaluable input.
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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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