Newsletter: Volume 4

Governance Board Updates

The Governance Board met April 6, 2018 with eight members present. Previously, the group agreed to begin each meeting with an ice breaker to help members get to know each other better. This meeting started with this feature and each member discussed their favorite food. Answers ranged from the native Chicagoan claiming Chicago deep dish pizza to homemade favorites Swedish meatballs with a red sauce and blueberry Polish pierogies!

CFReSHC has some membership changes. Congratulations to Traci Kazermski, who is on maternity leave for the next few months. The new baby makes four in her family! Two new members have joined CFReSHC. Welcome to: Linda Clark and Andrea Roe. Linda Clark is a research nurse in Dayton, Ohio who spent 15 years as an inpatient CF nurse; she will join the Governance Board. Andrea Roe is a gynecologist and family planning specialist who will join the RAP and plans to do more research in the field of fertility and contraception in CF. Since our grant ends July 31, 2018, no new members will be added until we discuss the future of CFReSHC.

Two meeting planning committee members worked on planning the Sexual/Reproductive Health CFF miniCON. The committee decided to host an “After Party” at the end of April to get feedback from the miniCON. The Communication Committee offered training on the various platforms used by members of the 3 groups. A training on Zoom was conducted so that members can host meetings and set up small group discussion sessions. A training on the google drive and outgoing mail platforms was held to ensure members understand how to communicate and share data with our members.

CFReSHC designed and distributed a Spring survey to PTF and RAP members. Due to a low response rate, the group discussed ways to ensure more members provide feedback to help shape the future of CFReSHC.

Once thing the group will discuss in upcoming meetings is how to keep CFReSHC going and how to modify CFReSHC to meet the requirements specified in the grants we (hopefully) receive. Nevertheless, CFReSHC is committed to keeping the Patient Task Force going to ensure that we make positive changes to the Sexual and Reproductive Health for women with CF. In order to do so, we will take a break from monthly meetings for the summer months. This is also because members have varied vaction schedules making planning more complicated.

 

April Patient Task Force Summary

We hosted a mini-con “After Party” on April 19, for Patient Task Force Members. The group talked about their experiences at the mini-con, what they discussed, what they learned, what went well and what could be better next time.

The group developed these potential research questions from the min-con discussions:

  • How to help people with CF who have libido concerns considering the factors (medications/illness) that impact libido?
  • What are the concerns/issues about contraception faced by women with CF?
  • What are the ways women with CF can prevent and treat vaginal yeast infections?
  • What does menopause look like for women with CF?
  • How do hormones affect CF symptoms?
  • How can we treat urinary and fecal incontinence in people with CF?
  • What are the SRH guidelines for CF Centers and care?

The group also discussed other observations about the mini-con::

  • While the miniCON was long–there didn’t seem to be enough time to discuss everything
  • There were more questions than answers
  • Some with CF are happy to not have kids
  • Many men and women deal with incontinence issues
  • People with CF struggle with a lack of sex drive
  • Need to talk more about STI/STD’s
  • People with CF need to learn about sexual positions when you have shortness of breath
  • Women with CF struggle with yeast infections

 

Research Advisory Panel Updates

Thirteen members attended the Research Advisory Panel meeting on April 24, 2018. Members started with an icebreaker providing one word to describe their day. Responses ranged from two members “in transit” to others “organizing” and “juggling.” The focus of this RAP meeting was to review the findings from the CFF miniCON on Sexual & Reproductive Health.

The group brainstormed ways to bring more Sexual & Reproductive Health research to CF clinics. One suggestion was a needs assessment. Another suggestion focused on surveying CF Clinics to identify what reproductive health topics are and are not being discussed. One member suggested having a conference for clinicians prior to the NACFC.

Highlights from the CFF MINICON

The miniCON workgroup consisted of 8 women and 2 men with CF. Of the 230 people with CF who registered, 130 participated in the 5-hour event held Sunday, April 8, 2018. Survey results indicate that is was well received and the CFF was pleased–even amazed by the turnout and survey responses. The event offered: 2 Panels: one on Family Planning and one on Parenting. Break out sessions covered a variety of topics including pregnancy, surrogacy, and adoption, living without children, parenting with CF, the LGBT community, male reproductive system, CF Women: natural cycles, hormones and contraception, menopause, incontinence and Fifty Shades of Sex. The goal is to hold 2 miniCONs of shorter duration on this topic in the future.