Community Voice: Monthly Results Update
June 2022 Edition
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Dear Community Voice Member,
Welcome to the June 2022 edition of the Monthly Results Updates!
In these digests you will learn about the impact Community Voice members are having through their participation in recent opportunities. If you would like to read about past projects, browse previous editions.
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2022 CF Foundation Community Survey
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In February, more than 650 members of the CF community, including 138 Community Voice members, participated in a short survey to help the CF Foundation assess our progress against our five-year strategic plan. This survey focused on understanding community perspectives regarding the Foundation’s programs, resources, and priorities, and the community’s involvement in shaping them. A few key takeaways included that:
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Most participants had neutral or positive responses throughout the entire survey, which was comparable to the previous survey in 2019.
Participants more familiar with the Foundation were more likely to respond positively throughout the survey.
Among nearly 120 open-ended comments, the most common areas of interest included: support/patience assistance; social support and connection; information sharing and access; and inclusion/representation. There were also many generalized comments that are referred to as “CF Foundation Sentiment” in the results report.
These survey results will be used to inform the CF Foundation’s on-going program and communication efforts. Thank you to every Community Voice member who participated!
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Open Opportunity:
WELL-ME (Wellness in the Modulator Era) Survey Update & Working Group
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In April, the CF Foundation brought together physicians, researchers, and members of the community to develop a study that aims to better understand the health-related needs and quality of life of people with CF, regardless of if they have ever taken modulators. The goal of this survey is to learn from the CF community about their experiences of care and overall wellness, including emotional, social, and financial well-being. If you are an adult with CF or a parent/caregiver of a child with CF aged 17 or younger, please consider taking this survey before July 31, 2022. This information will be used to help guide the Foundation’s future efforts to drive research, improve high quality care, and identify resources needed by the community. Stay tuned for an update on the results in the future.
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Additionally, we are excited to congratulate the community members below who served on the working group that helped make this survey possible.
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Pancreatic Enzyme Replacement Therapy Surveys
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In 2021, the CF Foundation partnered with Synspira Therapeutics, a company that is committed to CF research and evolving therapies, to conduct a survey which examined many aspects of pancreatic enzyme replacement therapy (PERT) usage in the CF community. Synspira Therapeutics is developing a new therapy that plans to streamline dosing, support long-term results, and is non-porcine based. The survey examined what is important to the CF community regarding how PERTs work, perspectives on potential new therapies, and the willingness to participate in clinical trials for new PERTs. It also explored the ways in which nutritional statuses are measured for those that utilize PERTs. Below are some important results that were identified from the survey:
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Again, this year, the CF Foundation partnered with Synspira for another survey that was distributed from June 9 to June 23, which aimed to gather the CF community’s feedback about what is important when considering participation in a clinical trial. Thank you to the 85 Community Voice members who contributed last year and those that contributed to the survey this year.
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LGBTQIA+ Resource for CF Care Teams
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Nearly 8% of adults and 10-16% of adolescents in the United States identify as LGBTQIA+, and evidence shows that individuals who are affirmed in their sexual orientation and gender identity have better health outcomes, lower rates of substance use, depression and suicidal ideation, and better engagement in healthcare. Through the CF Foundation’s Mental Health Advisory Committee, a task force was created and two Community Voice members were recruited to aid in identifying methods for CF care teams to support LGBTQIA+ patients during clinic interactions. In addition to highlighting evidence and other national resources, guidance for care teams included:
- Understanding and using correct terminology
- Addressing and being aware of biases
- Creating an LGBTQIA+ affirming physical environment
Congratulations to Eric Goldberg and Sharon McKellar for their contributions to this important work.
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Caregiver Resilience Project
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Last year, investigators from the Children’s Hospital of Orange County sought to recruit caregivers of children with CF aged 1-12 for two studies that helped inform a new questionnaire about common challenges and areas surrounding resilience. Through the first study, 16 caregivers from Community Voice participated in detailed interviews to review the questionnaire and ensure the questions were sufficient in their clarity, wording, and importance. The second study, which consisted of a revised online questionnaire informed by feedback from the first study, gathered insights from 30 additional caregivers and allowed the research team to identify five key domains, including helping children in medical settings, CF regimen-related efficacy, role functioning, social support, and emotional functioning.
As a result of this work, the research team applied for a CF Foundation Clinical Research Award to test the new questionnaire at seven pediatric hospitals across the United States. The results of this survey will also be presented at this year’s North American CF Conference (NACFC). Once validated, the tool will be used to facilitate meaningful discussions in clinic, study risk and protective factors for caregiver mental health concerns, identify key intervention targets, and evaluate interventions for caregivers. Thank you to all the Community Voice members who participated in this project.
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CF Adult Advisory Council
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We are pleased to announce the newest members of the CF Adult Advisory Council (AAC)! This council is a rotating group of adults with CF who lend their unique experiences to express the hopes, needs, and aspirations of the adult CF community. As a subsection of the Foundation’s Board of Trustees, the AAC serves as a consultative and advisory body to the organization on various areas and activities, with particular focus on issues of interest to adults with CF. The council received more than 25 applications from highly qualified Community Voice members to fill four open positions. Congratulations to the community members below who have joined Kristin Dunn, Raeshaun Jones, Kathy Shannon, Tré LaRosa, Teena Mobley, Leisha Cuddihy, Tony Madonna, Katherine Fielding, and Leah Aiken to serve on the council for a two-year term!
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In the Month of June We Celebrated -
LGBTQI+ Pride Month
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Community Voice was proud to recognize LGBTQI+ Pride Month throughout June and celebrate the legacy, contributions, and accomplishments of the lesbian, gay, bisexual, transgender, queer and questioning, intersex, and other identities (LGBTQI+) community. This celebration aims to highlight the resiliency, allyship, and intersectionality of the LGBTQI+ CF community and Community Voice membership.
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UPCOMING & OPEN OPPORTUNITIES
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Keep an eye out for upcoming opportunities in the next few weeks to share your perspectives and experiences on topics such as inhaled antibiotics, liver disease, and more. In the meantime, check out some open opportunities to participate in today!
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Sharing Insights & Experiences Through the CF Community Blog
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Check out this recent blog post by a Community Voice member! Community Voice currently has 156 members who have written 345 posts since the CF Community Blog launched.
Interested in sharing your story? The CF Community Blog wants to hear from you.
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