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.
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The Governance Board met May 4, 2018 with eight members present. This months ice breaker asked participants to identify their favorite childhood activity. Answers ranged from bike riding to swimming to being outside. The ice breakers help participants get to know each other since all of the meetings are by phone or using video conferencing program zoom.
The group discussed the end of Tier II funds available to be used between now and July 31, 2018. CFReSHC has exhausted funds to provide Amazon gift cards to PTF members for attending monthly meetings. Participants were asked if they were willing to attend future meetings without compensation. The group discussed taking a break during the summer months because of vacation schedules and lack of funding for meeting compensation.
The Meeting planning committee reviewed the plans for the May 30, 2018 PTF meeting on Incontinence. The Group Norms committee is working on language to address participants who take a leave of absence for illness or another reason. The group discussed the need for a member to secure a proxy for voting purposes. The group did not feel enough members would be absent at one time to prevent voting on pertinent issues. The Communications committee is working on advertising the PTF meeting, finishing the newsletter and writing documents required by PCORI as Tier II of the project comes to an end.
Patient Partner Sandy Sufian opted to spearhead the Cystic Fibrosis Foundation Impact Grant committee. She is also working on a potential research project in direct response to PTF feedback that would track hormones and CF symptoms during the menstrual cycle.
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Research Advisory Panel Updates
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Thirteen members attended the Research Advisory Panel meeting on June 5, 2018. The icebreaker asked members what type of exercise they enjoy. Answers included: yoga, Pilates, kickboxing, fitness blender, walking and bike riding. The focus of this RAP meeting was to review the findings from the PTF meeting on Urinary Incontinence.
The group discussed ways to bring the problem of urinary incontinence to the attention of CF Clinics. Participants were provided with a link to Dr. Karen Von Berg's class and video held at the CFRI conference last summer. One member suggested designing an informative flyer that could be submitted to CF clinics. Another suggested designing a survey that could be handed out during clinic since many patients are embarrassed and reluctant to discuss the issue. Some wondered if having a respiratory therapist ask patients if they need to void prior to performing pulmonary function testing would be a way to broach the topic during clinic. Members inquired if it is possible to bring a specialist into clinics to address the issue. Not much research has been done on this issue so it was suggested a good start would be for the Cystic Fibrosis Foundation to add questions about incontinence into registry data.
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ICYMI: The May PTF Meeting discussed Incontinence faced by women with CF.
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May Patient Task Force Summary
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Dr. Karen Von Berg discussed incontinence in CF during the May 30, 2018 PTF meeting. She provided attendees with a wealth of information. Interestingly, your pelvic floor muscles are working with every breath you take. Your breathing is linked to your posture and your brain will prioritize breathing over your posture. When posture and breathing are aligned, incontinence is less common. When breathing is hard, posture suffers and incontinence can occur. A physical therapist will assess a patient's posture and range of motion in spine and hips to develop a treatment plan. There are exercises that can be done through rehab to help strengthen your muscles to improve your incontinence symptoms. Another option is to see a urogynecologist, a pelvic floor specialist, for other treatment options like an internal examination and surgery.
Things we learned:
- Twice as many women as men struggle with UI
- Women tend to wait 6.5 years on average before seeking treatment
- The older you are the more likely you are to have it
- Not necessarily associated with poor lung function
- Literature shows anywhere from 30-80% of CF women experience UI
After the presentation, CFReSHC sent out a poll to patients to identify potential research areas. The top responses included:
- What exercises can CF patients do at home to address urinary incontinence?
- How do we get the CF clinic team to discuss and address urinary incontinence?
- How can we change state and private insurance policies to allow prescriptions/coverage for physical therapy and other non-traditional treatments for urinary incontinence?
- How do we make physical therapy/urogynocology referrals for urinary incontinence a normal part of the CF clinic referral network?
The one hour video presentation is also available to view at your leisure.
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We are taking a hiatus from Patient Task Force Meetings this summer, but keep in touch via email, Facebook, Twitter & Instagram.
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