Cystic Fibrosis Experience of Care Survey: Patient-Caregiver-Clinician Collaborative Design and Implementation

People with cystic fibrosis (PwCF), families, and clinicians, partner to co-produce care, navigate access barriers, address mental health and social factors, follow specific infection prevention and control practices, and share decision-making regarding treatments and daily care. Standard patient satisfaction and experience of care surveys are not tailored to return relevant, actionable data for specific populations. To improve the care experience, the U.S. CF Foundation committed to fielding a national survey in 2015. In 2020, the onset of the COVID-19 pandemic prompted revisions to capture virtual care experiences, a mode of care delivery not previously offered to PwCF. Leveraging this opportunity, the CF Foundation also reorganized how stakeholders are engaged in survey design, implementation, and improving the care experience. These changes resulted in a focused survey instrument as well as equitable and transparent data reports available to all stakeholders.