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Volume 4 April 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!
You can read last months issue of the CFReSHC newsletter here.

 

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.  
Many thanks to CFReSHC Patient Partner Molly Pam for initiating the CFF MiniCON on SRH!!
ICYMI: The Cystic Fibrosis Foundation miniCON was held April 8, 2018
CFReSHC members took part as planners, presenters, panelists, participants and facilitators.
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.
Adult women with CF are invited to join the upcoming
CFReSHC Patient Task Force Meeting!
 
The next meeting: May 30th 7pm-9pm EST
TOPIC: Incontinence in CF

Speaker: Karen Von Berg, PT

Email us at cfreprohealth@gmail.com to get log in details. 
RSVP's appreciated but not required.
CFReSHC Reseachers 

Shelia Mody, MD
Dr. Mody is an Obstetrician Gynecologist and Assistant Professor at the University of California San Diego. She completed her medical degree at the University of Michigan, did her residency at Beth Israel Deaconess Medical Center and Harvard University teaching hospital and her fellowship in Family Planning at Northwestern University. Her current research at UCSD focuses on contraception care for patients with medical conditions such as a history of solid organ transplant, breast cancer, and epilepsy. She also studies pain control during IUD insertion and using the Electronic Medical Record to collaborate with community‐based organizations in order to improve contraceptive utilization among women on teratogenic medications. Dr. Mody sits on the CFReSHC Governance Board and is on the Group Norms and Governance Committee. She is also an active member of our Research Advisory Panel.
 

Sexual and Reproductive Health Research
from CFReSHC Collaborators!

Publications
Ladores, S
., Bray, L., Landier, W., Cherven, B., & Meneses, K. (In Press).  Fears surrounding pregnancy and motherhood among women with cystic fibrosis. Women’s Healthcare.
 
DeBiasi, L., Nichols, L., & Ladores, S. (In Press). Critical Thinking Case Studies: Older adolescent with cystic fibrosis: Transitioning to adult care. Pediatric Nursing.
 
Ladores, S., Bray, L., & Brown, J. (In Press). “If we would have known”: A couple’s regret over a missed opportunity to have a biological child after lung transplantation.  Journal of Patient Experience.
 
Bailey, J., & Ladores, S.  (2018). Ethical issues when conducting research in people with cystic fibrosis.  Journal of Nursing Practice Applications and Reviews of Research, 8(1), 48-52.

Kazmerski, T.M.,Hill, K., Prushinskaya, O., Nelson, E., Greenberg, J., Pitts, S.A.B., Borrero, S., Miller, E., and G.S. Sawicki. “Perspectives of young women with cystic fibrosis and parents on sexual and reproductive health educational resources.” Accepted at Pediatric Pulmonology, March 30, 2018. doi:10.1002/ppul.24015
 
Presentations
Ladores, S. (2018, April). Sexual and reproductive health in individuals with cystic fibrosis: Where are we in clinical care and research?, Cystic Fibrosis Foundation Mini-Conference (keynote speaker), livestream of patient-centered tele-conference for attendees with cystic fibrosis.
 
Ladores, S.  (2018, July). Two unexpected pregnancies attributable to cystic fibrosis gene-specific drug therapy: A case study, Sigma Theta Tau’s 29th International Nursing Research Congress, Melbourne, Australia
 
Bray, L., & Ladores, S.  (2018, July). Gender-specific facilitators and barriers to health-related quality of life in adults with cystic fibrosis, Sigma Theta Tau’s 29th International Nursing Research Congress, Melbourne, Australia
 
Ladores, S., Bray, L. A., & Brown, J.  (2018, May).  Regrets over a missed opportunity to have a biological child: One couple’s journey after lung transplantation for cystic fibrosis, American Thoracic Society International Conference, San Diego, CA

Kazmerski, T.M., Miller, E., Sawicki, G.S., Prushinskaya, O.V., Thomas, P., Hill, K., Nelson, E., Miller, A., and S.J. Emans. “Stakeholder-guided sexual and reproductive health educational resources for young women with cystic fibrosis” Poster presentation at Society for Adolescent Health and Medicine (SAHM), Seattle, WA, March 2018; poster presentation at Academy of Communication in Healthcare ENRICH Forum, Tampa, FL, June 2018 (Best Poster Award Finalist)

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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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