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The CF Foundation has been closely monitoring the spread of COVID-19 to evaluate the potential implications for people with cystic fibrosis and their families. Visit cff.org regularly for the latest resources and updates from the Foundation.
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Dear Community Voice member,
Welcome to the February edition of the Monthly Results Updates!
New to Community Voice? Welcome! 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, click here to browse previous editions.
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Publication Announcement:
Community Voice: 2020 Year in Review Report
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Community Voice members were an unstoppable force in 2020! Members were involved in numerous groundbreaking efforts in CF research and care and quickly mobilized to help others in the CF community connect with one another. Thanks to you, the Foundation continued to gain momentum towards a cure despite the unprecedented challenges we faced during COVID-19.
We are excited to share the 2020 Community Voice: Year in Review Report! In this report we reflect on the biggest Community Voice achievements of 2020, and share:
- How Community Voice has grown and its impact on cure, care, and community efforts
- Testimonies from members and project owners
- A look into our team’s 2021 priorities
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Thank you for being an essential partner in our shared mission to help provide all people with CF the opportunity to lead long, fulfilling lives. We look forward to another great year ahead!
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2020 CF Community State of Care Survey
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The CF Foundation’s accredited and affiliate care programs quickly mobilized to provide virtual (telehealth) visits as part of specialized CF care while reducing risk of COVID-19 transmission. To inform these efforts, a national survey was conducted. With help from more than 400 members of the CF community, this research team gained several key insights from the survey, which included:
- Over half of the respondents were highly supportive of continuing telehealth for their CF care. They noted the greatest benefit of telehealth was the savings in time spent traveling to the CF clinic, followed by not needing to take time off from work or school.
- Most patients and parents responded that every effort was made from their healthcare provider during telehealth sessions to ask about topics or concerns they wanted to discuss, help them understand their health issues, and include what matters most in choosing what to do next.
- Nearly a quarter of respondents monitored lung function less frequently than recommended. In contrast, only 6% of respondents monitored weight less frequently than recommended and 11% monitored blood oxygen saturation less frequently than recommended.
- Financial concerns due to the pandemic included concerns regarding paying for medication, other care, food, utilities, housing, and co-pays.
These findings are being used to shape a two-day workshop next month with Foundation staff, clinicians, researchers, and community members to identify research and evidence priorities that will help inform the feasibility of integrating telehealth as a model of CF care. To view a summary of the results which includes notable remarks from respondents, please click here. Thank you to every Community Voice member who took the time to share their insights on this project!
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Food Insecurity Document Review
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Although tremendous progress has been made to find treatments and improve care for people with CF, food insecurity (lack of reliable access to enough affordable, nutritious food) is a barrier that many in the CF community face. To help address this topic, the CF Foundation’s Food Security Committee developed a resource for CF care providers to give to patients and their families during clinic visits. Members of Community Voice shared their personal experiences and feedback on this topic to help ensure the resource was informative, inclusive, and displayed sensitivity for this difficult topic. Thank you to every member who participated in this opportunity and emphasized the importance and need to increase education and decrease stigma associated with food insecurity.
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Tomorrow's Leaders is the Foundation's young professionals networking program that offers its members the opportunity to connect with others to learn and grow personally and professionally, all while making a difference in the lives of those living with CF. This year, members will have free and complimentary access to the virtual National Professional Development Learning Series, which consists of five learning tracks that cover topics on financial wellness, self-improvement, and more. To learn more and register for this program, please click on the button below.
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People living with CF are familiar with receiving treatment and therapies to manage their health. Understanding the intended effects and possible or expected side effects of a medication is important to determine whether they are working appropriately and if any of its side effects may require intervention. A team from the University of Arizona conducted a survey with more than 750 people with CF, caregivers of children with CF, and CF care teams to better understand the community’s perspective on whether current approaches to medication education are effective. Findings from the survey revealed that while respondents agreed on many values regarding medication education such as the importance of addressing side effects and cost, they also varied in how comfortable they felt when discussing other aspects such as adherence during clinic visits. Click here for a brief overview of the findings, which are improving medication education practices during clinic visits at the University of Arizona and University of Michigan CF care centers.
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Complementary and Alternative Medicine
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Complementary and alternative medicines (CAM) are medical products and practices that are not a part of standard medical care but can be raised as a topic of discussion by patients during their CF clinic visits. The research team from the University of Arizona conducted a survey with more than 1,000 people with CF, caregivers of children with CF, and CF care teams to learn about the use of and interest in CAM as a part of CF care. Results from the survey revealed that while consideration and use of CAM is relatively common, there is potential to improve how discussions on this topic are addressed during clinic visits. Click here for a brief overview of the findings, which are being used at the University of Arizona and University of Michigan CF care centers to better support care team members when navigating these conversations with their patients.
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Sharing Insights & Experiences Through the CF Community Blog
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Check out these recent blog posts by Community Voice members! Community Voice currently has 136 members who have written 304 posts since the CF Community Blog launched.
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