Take a closer look at the findings from the Long-Term Strategic Plan Input Survey, which collected insights from nearly 2,000 individuals in the cystic fibrosis community about the burden of the disease, research priorities, community, and more to help inform the CF Foundation’s next strategic plan.
Adults with CF, caregivers, clinicians, researchers, and volunteers completed the 2024 Long-Term Strategic Plan Input Survey, which focused on the Cystic Fibrosis Foundation’s priorities, the burden of living with CF, and other challenges associated with the disease.
Respondents identified themselves as*:
33%
26%
24%
19%
11%
10%
6%
6%
*Respondents were able to select multiple answers to this question.
The survey results reaffirm the importance of the Foundation’s mission to find a cure for CF and to provide all people with CF the opportunity to lead long, fulfilling lives. Results will help inform the CF Foundation’s next strategic plan for 2026-2030, which will be shared next year.
Adults with CF and caregivers express overwhelming support for the Foundation to continue pursuing research- and care-related activities. Respondents indicate it is very important or absolutely essential for the Foundation to do the following over the next 3-5 years:
In addition to the search for a cure, the CF Foundation should continue to pursue research that affects the daily realities of people living with CF.
— Caregiver for a person with CF
Respondents were asked to prioritize different Foundation activities and indicate how important each area was for the CF Foundation to pursue. The findings show how important it is to respondents to balance research into curative therapies and addressing the challenges of living with CF today.
Respondents also provided their own suggestions for research priorities. Two themes that emerged were:
Caregivers identified genetic therapies as most important. Adults with CF also said genetic therapies were most important, however, they indicated the importance of the other top priorities more equally.
Based on the findings indicating that digestive complications and aging with CF are top issues for people with CF, the Foundation conducted a follow-up survey to learn more, hearing from more than 500 adults with CF and caregivers.
Related to aging with CF, follow-up survey respondents indicated the following health-related topics should be considered a high priority for the Foundation to support research or development of care best practices:
People my age with CF are living much longer than we did before, which causes issues related to health that were not studied before, since people typically died before they became issues. The whole focus of adult CF care needs to change for this reason. We ate high fat high protein diets for most of our lives, and that is definitely going to catch up to us, and there are more complications with aging CF bodies than anyone knew about before.
— Adult with CF
While many people with CF who take modulators are experiencing better quality of life, around three-quarters of survey respondents rated at least one challenge as very burdensome. Respondents not on modulators and people of color reported an even higher degree of burden. Additionally, while some complications are less common overall, such as CFRD and transplant, those who do experience them find them very burdensome.
The following are the top five challenges adults with CF and caregivers said were “very burdensome”:
In the follow-up survey about digestive system complications, these digestive system issues were identified as most burdensome to quality of life and daily activities*:
* Rated as moderate or high burden
Respondents who describe their health status as fair/poor were more likely to report burdensome gastrointestinal issues, including reflux and poor appetite.
Many survey respondents reported having a digestion-related diagnosis, and those who reported that their health was fair/poor were more likely to have a digestion-related diagnosis. Those diagnoses include:
GI issues for me are a daily burden — physically and psychologically. 62 years. Every day.
— Adult with CF
Some respondents note that they need more resources on specific topics, including:
Navigating CF care
Mental and emotional health
CF complications
Follow-up survey respondents identified these as top priorities related to navigating life with CF as they age:
I’d like there to be more information about potential CF complications ... that isn’t sugar-coated and is actually helpful to people facing those issues.
— Adult with CF
Adults with CF and caregivers share an overall positive impression of care teams. Survey respondents:
Care team members identified a range of barriers to providing the best care for people with CF in today’s health care environment. Care team survey respondents experience the following:
Respondents have varying levels of interactions with different CF Foundation events and programs. Among the different survey demographics, caregivers are more likely to advocate, volunteer, or participate in fundraising programs. Adults with CF, however, are more likely to engage with services and programs provided at the national level. Respondents have:
Participated in fundraising events or programs
Used Compass, the Foundation’s personalized service
Participated in local CF Foundation chapter board or event committees
Participated in virtual connection and education opportunities
Participated in advocacy actions or events
A lot of events seem to be tailored to parents of kids with CF which is great, but I'd love to be included as a person living with CF, too.
— Adult with CF
According to survey results, nearly one in five respondents with CF (or those caregivers answering on their behalf) are not taking modulators. Below are the survey respondents’ modulator status among adults with CF and caregivers responding for a loved one with CF:
Adults with CF who responded to the survey are more likely to describe themselves as being in fair or poor health compared to caregivers responding for a loved one.
A smaller portion of adults with CF who responded to the survey were diagnosed by age 1 compared to caregivers responding for a loved one.
Below are the data on genders of adults with CF and caregivers responding for a loved one with CF, compared with 2023 CF Foundation Patient Registry participants.
Adults with CF and caregivers for a loved one with CF who responded to the survey were from the following racial and ethnic backgrounds*:
*Respondents were able to select multiple answers to this question.
As the organization develops its next strategic plan, the results from these surveys will help guide priorities for 2026-2030.
There is always room for improvement in any organization and I feel like surveys such as this help gather the information and use it to improve overall. I very much appreciate that the organization cares enough to put out surveys to give us a voice!
— Caregiver for a person with CF
The Foundation continues to seek input from the CF community related to its efforts and their personal experiences. Community members can further inform the Foundation’s work and impact CF research, care, and programs by joining Community Voice and engaging with local chapters. To stay up to date on the Foundation’s efforts, sign up to receive updates.