Dear Community Voice member,
Welcome to the January 2022 edition of Monthly Results Updates!
In these digests you will learn about the impact Community Voice is having through recent opportunities that members have participated in. If you’d like to read about past projects the group has been involved in, browse previous editions. Visit cff.org regularly for the latest resources and updates from the Foundation regarding COVID-19.
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2020 Patient Registry Handout on CF Care & COVID
Throughout 2020, people with CF managed their health amid disruptions to daily life caused by the COVID-19 pandemic. Data captured in the CF Foundation's Patient Registry show remarkable trends in the health of people with CF and the care they received in partnership with their CF care teams – a testament to the strength and resilience of the CF community.
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CF-Related Diabetes Manual Review
CF-related diabetes (CFRD) affects more than 35% of adults with CF and is consistently ranked as a high priority by the CF community. Education is the cornerstone of diabetes management, so to help support those who have been diagnosed with CFRD, the CF Foundation convened a team of CF diabetes educators, dieticians, nurses, and one community member to develop an educational care manual for people with CF and their caregivers. This manual is still in development and will be distributed to care centers in late 2022. We would like to thank Community Voice member Noor Elshaar for reviewing this resource and sharing her insights to help shape this resource!
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"Having the opportunity to partake in this project is something I will never forget. Being trusted by my wondrous team will be an experience I will always cherish, especially knowing that I was of significance to the future of CF."
Noor Elshaar, Community Voice member
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Urinary Incontinence Interviews
CF can affect many parts of the body, including the urinary tract. Urinary incontinence (UI), the involuntary loss of urine, is common in women with CF. However, addressing UI care has been significantly understudied. Researchers from Magee Women’s Hospital, University of Pittsburgh, and Johns Hopkins University conducted an interview-based study with 26 women with CF in Community Voice to better understand their experiences and its impact on their daily lives. Findings from the study revealed:
- Many were not aware of the correlation between CF and UI
- Feelings of stigma, shame, and embarrassment served as a barrier in seeking treatment
- Those who received highly effective modulator therapy experienced a relief in severe coughing and UI frequency, resulting in a related reduction of symptoms
- Many wished they began treating UI earlier in their lives
- Many preferred physicians regularly screen for UI symptoms during yearly visits
- A pereference for effective, non-invasive, and cost-effective treatments.
Despite the longstanding relationships people with CF may have with their care teams, women often do not feel comfortable speaking with their physicians about UI symptoms. Physicians may be able to fill this gap in care by providing regular screenings, offering affordable and non-invasive treatments, and incorporating UI-specific providers such as urogynecologists or pelvic floor physical therapists as a member of the comprehensive CF care team. Researchers are now planning a follow up pilot study to explore treatment options available for women such as physical therapy, reusable underwear, and disposable urethral inserts. If you reside in Pennsylvania or Maryland and are interested in participating in this study, please contact bradleym4@upmc.edu. Thank you to everyone who participated in these interviews!
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Clinical Research Committee
Since 2018, several members of Community Voice have served as community grant reviewers for the Clinical Research Committee, which funds academic research studies led by CF clinicians and researchers. Community reviewers provide feedback on each study proposal’s feasibility and relevance to people with CF to help advise on funding decision. The committee leads received twelve quality applications to their call for applications and we would like to congratulate Art Brace who will be joining 19 other Community Voice members to review clinical research grants for the spring 2022 cycle!
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Sharing Insights & Experiences Through the CF Community BlogCheck out this recent blog post by a Community Voice member! Community Voice currently has 147 members who have written 330 posts since the CF Community Blog launched.
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Register for NextBreath on Feb. 24
Are you or a loved one with CF living with advanced CF lung disease or navigating the transplant journey? Join us on Thursday, February 24 for NextBreath, a free, online event for people with CF, family members, and caregivers age 16 and older to come together with others who are going through similar experiences. Attendees will find support, have candid conversations, and make meaningful connections through relaxed, small group discussions about life with advanced disease, considering a transplant, preparing for a transplant, and life post-transplant. Check out the full agenda, register today, and save the date for upcoming events!
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| Upcoming & open opportunities
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Keep an eye out for several upcoming opportunities where you can share your perspectives and opinions on topics such as the CF Foundation’s Strategic Plan, CF Adult Advisory Council, the STOP-3 (standardized treatment of pulmonary exacerbations) study, and more.
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| cOVID-19 MEDICAL ADVISORY GROUP
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We would like to congratulate Sharon Cray who will be joining three other Community Voice members to serve on the COVID-19 Medical Advisory Group! This group will provide guidance to clinicians, patients, and families on COVID-19 and the intersect of topics such as CF clinic, school and work, emotional wellness, assessing risk, and vaccination. To learn more about this group, check out our November edition.
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