Creating a SRH Guide
We are creating a guide by CF Patients for patients, CF providers, and women's health providers. Please help us narrow down topics and ideas for implementation.
Please pick your top 8 topics for inclusion in a guide
Hormonal influences on CF symptoms
Nutrition/Body Composition/body image
Transplant and SRH
Modulators and SRH
Effects of psycho-social issues on adherence to CF treatment
Improving the Provision of Care
Pre-Planning for Patients
Genetic and prenatal testing
Are there any SRH topics not listed above that you think should be included?
Should we include topics that have known action items (ex. yeast infections, incontinence) or all items, including unresolved ones (ex hemoptysis during menses)?
Known action items
All items, including unresolved
I don't know
Are you interested in working on the guide next year?
What form do you think the guide should take?
static website (online resource)
hard copy resource
Interactive website (interactive online resource)
all of the above
After today’s discussion, does this sound like something we should pursue for year two?
How many work groups do you want to be part of? A workgroup will take approx. 4 hours per month. We are applying to grants so that we can pay patient partners for their time, but we cannot guarantee it. Each work group will write the guide section for one topic, chosen from this poll.
Our next meeting will be held June 14, 11am-1pm pdt/ 12pm-2pm mdt/ 1pm-3pm cdt/ 2-4pm edt. We will have a panel of three women with CF who all experience different types of SRH associated pain. Do you think you will attend?
yes, but I don't know yet if I can make it
no, I'm not interested
I love this topic, but I sadly cannot make it
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