Community Voice: Monthly Results Update
December 2023 Edition
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Dear Community Voice Member,
Welcome to the December 2023 edition of the Monthly Results Updates!
In these digests, we share the impact Community Voice members are making through participation in recent opportunities.
All Community Voice projects undergo our vetting process to ensure they have a positive, clear impact on the CF community and aim to engage as many diverse voices as possible. While some projects may take time to provide results or an outcome, they are always shared here. If you would like to read about past projects, browse previous editions.
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The CF Foundation recently held focus groups as part of the Therapy Initiation and Modification in the ETI era (TIME) project to discuss starting, changing, or stopping preventative pulmonary-focused therapies or medications (such as inhaled and oral antibiotics) for individuals benefiting from Trikafta (elexacaftor/tezacaftor/ivacaftor, or ETI). Focus group participants shared what it means to be “stable” since they or their child started ETI, what their pre- and post-ETI treatment regimen looks like, and what guides them in making treatment decisions now that they are on ETI. The participants also shared what kind of research data would help them decide to start, change, or stop preventative pulmonary-focused therapies or medications. Themes from the focus groups will be published and shared with the community when finalized. Top community priorities for research data have also been incorporated into a list of “Areas of Interest” for researchers to focus on when applying to an upcoming CF Foundation grant related to the topic. Although the focus groups and this funding is focused on research related to those who are eligible for modulators, the CF Foundation is continuing to prioritize, fund, and pursue research to help people with CF who are not currently benefitting from modulators.
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| Mind-Body (or Psychological) Interventions for Pain Management
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Pain among those living with CF has historically been understudied and can be treated with both medication and non-medication (psychological) interventions. Researchers interviewed adults living with CF (including 14 Community Voice members) to better understand their experiences coping with CF-related pain. Community members shared that pain is a part of life with CF, and many experience multiple sources of pain throughout their lives. Some noted that it impacts their quality of life, especially their mental health. Some community members shared that their experiences of pain were not taken seriously, waiting for years to receive treatment, and advised CF teams to listen and validate pain experiences in people living with CF.
The results from these interviews were used to develop a CF-specific non-medication mind-body intervention for pain management and will support a multi-center pilot trial of the intervention. Researchers expressed that the content and quotes from the interviews were used in the materials for this approach help to destigmatize the topic and let community members know they are not alone in experiencing CF-related pain.
Preliminary results were shared at the Cystic Fibrosis Research Institute’s (CFRI) 2023 National CF Conference, and researchers hope to present additional results at the 2024 North American Cystic Fibrosis Conference (NACFC). We will share additional updates with the community, including published results, as they become available. Thank you to the Community Voice members who supported this work!
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Compass Resource Database Tester Project - Final Update
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Earlier this year, CF community members helped test a patient assistance resource. We are pleased to share that the new self-service tool to help people with CF and care team members find support resources is now available! Compass has launched the CF Resource Database, a searchable database that houses hundreds of CF-related resources most frequently used by case managers. From financial assistance to wellness resources, people with CF, their families, and care teams can now use the CF Resource Database to quickly find the best program to address their needs. If at any point someone needs help navigating the search tool or would like more customized solutions, a Compass case manager is always available to assist. Thank you to the Community Voice members who helped to test and improve this valuable resource!
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In February 2023, we shared an ongoing open opportunity to join a two-week app-based study for the CF Tummy Tracker. Recruitment has now ended, and we are excited to share an update from the project. The Comprehensive Approach to Relief of Digestive Symptoms in Cystic Fibrosis (CARDS-CF) study is a reflection of the top 10 priorities in CF research first highlighted by the James Lind Alliance Group in 2017. Participants in the study used the “CF Tummy Tracker” app to track their different gastrointestinal symptoms, and the impact and burden they had on their lives over a two-week period. Over 150 people participated in the study, mostly in the United Kingdom, with 10 participants from North America. Participants felt using the app to monitor their symptoms was helpful and expressed interest in using app-based trackers for CF symptoms in the future. The researchers behind the study shared their thanks to the CF community members who were involved in designing the CF Tummy Tracker app and to those who helped extend the study’s reach internationally.
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UPCOMING & OPEN OPPORTUNITIES
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On February 9th and 10th, the CF Foundation will host BreatheCon, an event for adults with cystic fibrosis to virtually gather with one another in a welcoming, inclusive space where you can be your authentic self. No matter if you are seeking to learn from others, share your CF journey, or just want to socialize, all adults with CF are welcome to attend! BreatheCon sessions on Friday, February 9th, will be accessible in Spanish. You can view the preliminary schedule and register today. The first 75 first-time attendees to register will receive a limited-edition gift!
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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 exploring attitudes towards CF nutrition, trust dynamics between care teams and families, and more.
In the meantime, participate in some open opportunities 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 175 members who have written 393 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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