XoC Survey Update

The CF Foundation has phased out the Patient and Family Experience of Care (XoC) Survey as of December 31, 2025. Over 10 years, the iterations of the survey have helped our community learn directly from patients and families about their care experiences and how collaborative, trusting relationships are formed with their care teams.

While we celebrate the publications and reports generated from these data, it is time to pivot and focus our resources on addressing emerging areas of need in CF, such as the challenges clinical teams face in the current health care environment—limited time for work outside of clinic appointments, managing clinic operations, and difficulty getting patients access to medications and other specialists. Likewise, for patients and families, addressing the burden of care associated with aging and complications, and, of course, finding a cure for all people with CF.

We wish to extend our sincerest thanks to all the people with CF and families who participated.

Source: XoC Steering Team CFF