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

Stacy Allen; Maxwell Vetter; David W Davison; Gemma Cochrane; Ahmet Uluer; Deidre Jennings; Fadi Asfour; Kathryn A Sabadosa; Julianna Bailey

doi:10.1177/23743735241302739

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

J Patient Exp. 2024 Dec 27:11:23743735241302739. doi: 10.1177/23743735241302739. eCollection 2024.

Authors

Stacy Allen¹, Maxwell Vetter¹, David W Davison², Gemma Cochrane³, Ahmet Uluer⁴, Deidre Jennings⁵, Fadi Asfour¹, Kathryn A Sabadosa⁶, Julianna Bailey⁷

Affiliations

¹ Primary Children's CF Center, Salt Lake City, UT, USA.
² University of Nebraska Adult Cystic Fibrosis Program, Omaha, NE, USA.
³ Yale University School of Medicine, New Haven, CT, USA.
⁴ Boston Children's Hospital, Brigham & Women's Hospital, Boston, MA, USA.
⁵ University of Virginia, Charlottesville, VA, USA.
⁶ Cystic Fibrosis Foundation, Bethesda, MD, USA.
⁷ University of Alabama at Birmingham, Birmingham, AL, USA.

Abstract

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.

Keywords: coproduction; cystic fibrosis; experience-based co-design; patient engagement; patient experience survey; patient-and-family centered care; quality of care.