(80) Development of a National Cystic Fibrosis Patient and Caregiver Experience of Care (XoC) Survey

Background: Since 2015, the CF Foundation (CFF) has collected and reported experience of care data. Data collection was discontinued with the onset of the COVID19 pandemic in 2020. In 2021, CFF convened a steering committee of a person with CF, caregivers, and clinicians to develop a new experience of care (XoC) survey to understand and improve the experience of care at CFF accredited programs.

Methods: Using prior CFF patient and family experience of care surveys (2015-2020 pediatric and adult versions)^1,2 and a telehealth survey created in 2020³, draft pediatric and adult versions of the survey were developed. The steering committee and CFF leaders conducted three separate rounds of review and revision. The surveys were professionally translated into Spanish and reviewed by CFF’s Spanish Speakers committee. The surveys were programmed into Qualtrics for data collection. The data collection process was piloted with selected programs prior to a national launch.

Results: Pediatric and adult surveys were developed in English and Spanish. The surveys cover in-person and telehealth (phone/video) visits, and visits that are a mix of in-person and telehealth. The topics include interactions with care team members, relationship-centered care, care planning, shared decision-making, overall quality of care, race/ethnicity, gender identity, infection, prevention, and control, quality of the virtual connection, and experience with remote monitoring. People with CF (PwCF)/families are invited to complete a survey once every 6 months either by SMS message or email. PwCF/family contact data (email and mobile phone number) are stored in CFF’s CFSmartReports Patient and Family Tool. After a clinic visit, contact data are electronically transferred to the Qualtrics platform to trigger a survey invitation. Responses are anonymous and reported back to programs via an electronic dashboard in near-real time. The data collection process was tested with 3 pediatric and 3 adult care programs for 3 weeks before the national launch on October 25, 2021. Over 2,000 PwCF/families have completed a survey.

Conclusions: The new XoC surveys offer PwCF/families an opportunity to share feedback about their in-person and virtual care experiences. Efforts are underway to create a national report for dissemination and to engage programs the data reported in their dashboards to celebrate what PwCF/families appreciate about their care and to work together with their patients/families to improve gaps.

Acknowledgements:

References: 1. Qual Manag Health Care. Apr-Jun 2013;22(2):100-16. doi: 10.1097/QMH.0b013e31828bc3bc. Development and validation of a cystic fibrosis patient and family member experience of care survey, Karen Homa, Kathryn A Sabadosa, Eugene C Nelson, William H Rogers, Bruce C Marshall, PMID: 23542365

2. J Cyst Fibros. 2015 Jul;14(4):515-22. doi: 10.1016/j.jcf.2014.12.011. Epub 2015 Jan 30. Experience of care from the perspective of individuals with cystic fibrosis and families: Results from 70 CF Foundation accredited programs in the USA, Karen Homa, Kathryn A Sabadosa, Laura C Marrow, Bruce C Marshall, PMID: 25649286

3. J Cyst Fibros. 2021 May;20(3):e23-e28. doi: 10.1016/j.jcf.2021.03.009. Epub 2021 Mar 26. Patient and family perceptions of telehealth as part of the cystic fibrosis care model during COVID-19, Davis Jaclyn, NeSmith Andrew, Perkins Ryan, Bailey Julianna, Siracusa Christopher, Chaudary Nauman, M Powers, Sawicki Gregory S, Solomon George M, PMID: 33775604 PMCID: PMC7997421