Community Voice: Monthly Results Update
December 2024 Edition
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Dear Community Voice Member,
Welcome to the December 2024 edition of the Monthly Results Updates!
In these digests, we share the impact Community Voice members are making through participation in recent opportunities. In this month’s edition, we’re sharing more about:
- Updates in Pain in People Living with CF
- Results from the COST-CF Survey
- New members joining the
BreatheCon 2025 Planning Committee
- Opportunity to join the Medical Traumatic Stress in CF Study, and more
If you would like to read about past projects, browse previous editions.
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Pain in People Living with CF
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New Guidance on Addressing Pain in CF
In partnership with the CF community and CF healthcare providers, the CF Foundation has issued new guidelines on pain titled “Addressing Pain in People Living with Cystic Fibrosis: A Cystic Fibrosis Foundation Evidence-Informed Guideline”. The CF community informed the new guidance through:
- Active participation from three community members on the CF Foundation’s Pain Management Guidelines Committee
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Forty community-submitted public comments on the draft guidelines
The updated guidelines are now available to read in the Journal of Cystic Fibrosis, and we would like to thank everyone who helped along the way for these guidelines to be published.
Psychological Intervention for Pain Management
Recognizing that there had not been any studies looking at psychosocial approaches for coping with pain in CF, researchers interviewed adults with CF to understand their pain experiences. In late 2023, we shared with Community Voice preliminary results of this work, including how community members described pain as a part of living with CF that impacts their mental health and quality of life.
The results have now been published in the Journal of Cystic Fibrosis, and are available to read: “‘How do you live the beset life you can with this pain?’ A qualitative study of the challenges of living with CF and pain in the modulator era” (#564, bottom right of page 1, please note that this is an abstract and not a peer reviewed publication).
Researchers noted that pain in CF remains a prominent and burdensome symptom and requires a multicomponent approach to manage it. The results are being used to shape a tailored psychosocial pain management intervention for adults with CF. Thank you again to the 14 Community Voice members who participated in the interviews to aid in this important work.
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COST-CF Survey Results Now Available
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Earlier this year, we asked you to share your experiences with health care costs and how those costs may impact you and your family. You generously shared your experiences as part of the CF Outcome, Social Factors, and Tradeoffs Due to Coverage and Financial Burden (COST-CF) Survey. The results showed that though each person’s journey with cystic fibrosis can look different, the burden associated with the disease can be felt regardless of geography, income, and insurance coverage. Read more about the results of COST-CF.
More than 1,400 people took the survey, and 80 percent of respondents were people with CF, parents, or caregivers.
- Nearly 70% of people with CF experienced a financial challenge in the last 12 months due to CF-related medical bills.
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More than one in four people with CF experienced food insecurity in the last 12 months.
- Thirty percent were unsure what questions to ask their CF care teams about financial challenges.
This information is helping the Foundation understand how to support the CF community and care teams in addressing financial issues associated with CF. Watch your inbox for future opportunities to get involved with CF Foundation efforts related to financial wellness through Community Voice!
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BreatheCon Planning Committee 2025
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BreatheCon is a free, online, community conference to connect with other adults with cystic fibrosis in a welcoming and inclusive space. The CF Foundation’s Community Conferences team partnered with Community Voice to recruit adults with CF to serve as members of the 2025 program planning committee. We are happy to announce the 12 Community Voice members joining the BreatheCon planning committee: Caleigh Haber-Takayama (Co-Chair), Brandon Wright (Co-Chair), Kirk Astroth, Anna Battista, Timothy Duggan, Medora Frei, Genevieve Kahlweiss, Elizabeth Kellner, Jennifer McCormack, Leah Rossett, Christina Schulze, and Chelsea Stahl. They are joining four other community members to shape this event.
BreatheCon will take place February 7-8, 2025. View the event programming and reserve your spot by registering today!
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Keep an eye out for upcoming opportunities in the next few weeks to share your experiences with menopause and perimenopause, transitioning from pediatric to adult care, financial wellness, and other topics.
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Medical Traumatic Stress in CF Study
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Researchers at the University of California San Francisco are seeking 100 young adults (ages 15 to 25) with cystic fibrosis to test a new medical traumatic stress survey tool. The goal of this work is to support the development of resources that address CF-specific mental health needs.
This project builds on past interviews with the CF community through Community Voice, through which researchers collaborated with adults and parents of children with CF to develop a new questionnaire to assess medical traumatic stress.
Participants will receive a $50 gift card for completing a series of 3-4 surveys. To learn more or sign up please contact Dr. Addison Cuneo at Addison.cuneo@ucsf.org. Participants under the age of 18 need parental consent to participate. Please note this is an external opportunity hosted beyond the CF Foundation.
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