Newsletter Volume 10

Governance Board Updates

During the March meeting, attendees listened to project updates. The Eugene Washington Award team is working on developing a training program and plans to start getting PTF feedback in May. The Impact Award team reviewed PTF survey results. Results indicate that women with CF would like meetings held during the summer months and would like to revisit previously discussed topics.

Members discussed pending grant applications. The group discussed the need for more clarification on data ownership, CFReSHC compensation as a stakeholder and members as subcontractors and future grant applications. Members explained the difference between being a consultant on a grant and earnings as a full time employee. CFReSHC will design a “Memorandum of Understanding” and revise the Norms document to add clarification to procedures.

Research Advisory Panel (RAP) work groups on Menopause, Hormones, Incontinence and Pregnancy Decision Making Tool will meet in April to finalize grant Letter of Intents (LOI), grant applications for accepted LOI’s and planned projects. The next RAP meeting will be May 10, 2019.

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

The goal with the EWA is to bring patient-engaged research to the CF Community. This is a multi-step process that will take two years to complete.

Members of the EWA grant team transcribed the recordings of online platform personal interviews. The next step is to create a code book for content analysis. The team is finalizing our PCOR training competencies and objectives. The next step will be to map existing training to competencies and objectives. The team is actively working on submitting abstracts to various upcoming conferences. The team hopes to start developing a training program and present it to volunteers from the PTF. Gift cards will be provided to compensate members for their time.

CFF Impact Grant

CFReSHC has two aims under the CFF Impact Grant: to conduct Patient Task Force meetings and to build a CFReSHC website. The website is live so please visit www.CFReSHC.org to check it out. The PTF meetings provide a forum for women with CF to share their personal stories and experiences on SRH issues, while also providing the Research Advisory Panel with research priorities and research questions. We have held 6 PTF meetings and have generated 18 potential research questions. Participation by PTF members on post meetings surveys are crucial to the grants success. Even members unable to attend the meetings are invited to take the monthly survey to offer their input. Members of the team are actively working on abstract submissions to various upcoming conferences like CFRI and NACFC.

PTF Meeting Overview

ICYMI: Dr. Tanja Gonska discussed: “Nutrition in CF: what do we know about diet and body composition.” View the presentation here

On March 21, Dr. Tanja Gonska discussed her research on the changing nutritional needs in CF patients and how body composition plays a factor in assessing health status. The standard of care illustrated that better nutrition led to better outcomes. This often meant that better outcomes were associated with a better body mass index or BMI. But, Dr. Gonska points out that the type of tissue (muscle, fat, bones and other tissues) or the patient’s body composition plays a role in positive outcomes. There are three methods for testing body composition: DEXA scan, the BodPod and bio electrical impedance.

Dr. Gonska pointed out that the addition of modulators has increased the rate of obesity in CF patients. In 2011-12, at one CF center with 226 patients between the ages of 2 and 18, 23% of the patients were obese. Obesity is indicated by a BMI over 30.0. Two potential factors influencing this could be: modulators requiring fatty meals/snacks and changes in energy expenditures for patients on modulators. She did stress that women with CF on modulators should continue taking enzymes with meals because modulators do not seem to change malabsoprtion. Dr. Gonska does feel that a discussion on “how people eat” should start now to curb the trend towards obesity in CF patients.

During the break out sessions, attendees discussed:

  • their frustration with gaining weight on modulators while still being pancreatic insufficient
  • the impacts of various diets on their health: counting calories, veganism, organic
  • getting nutritional information outside of their CF clinic
  • if having overweight or obesity in your chart leads to insurance discrimination?
  • after years of high calorie/fat diets, HOW DO YOU CHANGE NOW?
  • how higher weights affect other functions in our body like heart conditions, bone stress, etc
  • How do body image concerns affect girls and women with CF at different stages of life?

Dr. Gonska provided a discussion summary for the future of CF Nutrition. If you missed the post meeting survey, you can find it HERE. Your input is crucial to provide the most current information to researchers.

Patient Task Force Research Priorities

  • Women who voted on the post PTF poll selected these three research areas:
  • What does a healthy diet look like for people with CF?
  • 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.
  • Have your eating habits changed since being on modulators? If so, how?

SAVE THE DATES

On Thursday, April 4 from 1-3 pm EST, women’s health care providers Dr. Emily Godfrey (Univ. of Washington) and Dr. Sheila Mody (UC-San Diego) will discuss how to find a women’s health care provider that meets your needs by reviewing what questions to ask and clarifying your goals for each visit.

Learn more about how CFReSHC is creating a CF sexual and reproductive health guide for providers on MAY 18, 2019 from 12-2 pm EST. (See article below.)

May Patient Task Force Meeting

CFReSHC is developing a guide by patients for providers to improve CF Sexual and Reproductive Health (SRH) standards of care. Join us Saturday May 18, 2019 from 12-2 pm EST (11-1 CST, 10-12, 9-11 PST) to learn about the purpose of the guide and how YOU can participate in its development.

Dr. Patricia Walker, Director of the Mount Sinai Beth Israel CF Center, and CFReSHC Research Advisory Panel member, proposed a guide by patients for providers after listening to reports from monthly PTF meetings. She will join us to discuss her idea and its need by clinicians. Break out sessions will enable attendees to formulate a plan for the guide’s design and development. CFReSHC plans to apply for another Cystic Fibrosis Foundation Impact Grant to fund the guide. This guide, written by women with CF, will be used as a resource for CF clinicians and women’s health care providers.

The goal for the guide is to raise awareness for patients and providers about CF-SRH. In addition, the guide will empower patients to provide CF and women’s healthcare providers with guidance on how to best integrate CF-SRH concerns into clinical practice. PTF members will be invited to participate in a survey selecting the top 10 topics to be covered in the guide. Then members will participate in work groups to research and write about focus topics, present their findings at future PTF meetings and formulate questions for clinic visits. All members of the PTF are welcome to participate on the work groups to build the guide for CF and women’s health providers.

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