(81) Results from the National CF Foundation Experience of Care (XoC) survey

Background: Developed by a multi-stakeholder steering committee of a person with CF (PwCF), caregivers, and clinicians, the CF Foundation Patient and Family Experience of Care (XoC) survey collects data about in-person, telehealth, and in-person and telehealth visits. There are four surveys, pediatric (< 18 years) and adult (≥ 18 years) in English and Spanish, each with 10 core questions and 3-5 additional questions depending on the type of visit. Topics include interactions with care team members, care planning, shared decision-making, overall quality of care, race/ethnicity, gender identity, quality of the virtual connection, experience with remote monitoring, and infection prevention/control. Data from all respondents are reported in a national dashboard. After one year of data collection, we report a summary of the national findings.

Methods: PwCF/caregivers consented to participate in the CF Foundation Patient Registry are eligible to complete a XoC survey. PwCF/caregiver contact data (email and mobile phone number) are entered and stored in the CF Foundation’s CFSmartReports Patient and Family Contact Tool. After a clinic visit, contact data is electronically transferred to the Qualtrics platform to trigger a survey invitation. PwCF/families are invited to complete a survey every 6 months either by SMS message or email. Responses are anonymous and reported back to programs via an electronic dashboard in Qualtrics. These data exchanges are covered by a Business Associates Agreement (BAA) between the CF Foundation and the care program. Participating programs have designated PwCF/caregivers and clinicians as “XoC Champions” to access report dashboards, interpret findings, and organize improvement efforts. XoC Champions meet regularly in a community of practice to share learning and improvement methods. The national dashboard report of all programs and respondents is reviewed by the steering committee chairs and CF Foundation leaders. Overall quality of care is reported both as percentage of top-box score and an average quality score on a scale of 1-9.

Results: A 182 CF programs participate: 88 pediatric, 84 adult, and 10 affiliate; with a total of 12,054 pediatric, 11,392 adult, and 555 affiliate patients eligible. As of April 2022, over 2,200 PwCF/caregivers responded; 1,212 from adult programs, 1,038 from pediatric programs, and 49 from affiliate sites. Currently 23% of clinic visits for adult programs are 8% of visits are telehealth for pediatric programs. The average response rate for adult programs is 13% and for pediatric programs is 11%. At present, the average quality score is 8.6 for adult programs and 8.7 for pediatric programs. Pediatric African American/Black and Hispanic/Latinx patients reported lower rates of leaving clinic with a care plan that worked for them (80%) compared to the national average (86%). Forty-two people took the survey in Spanish. There are 307 XoC Champions: 255 clinicians, 27 PwCF, and 25 caregivers from 139 programs.

Conclusions: Results demonstrate opportunities to improve the PwCF/caregiver care experience. Continuing and future efforts will focus on increasing national response rate and using results of the survey to guide quality improvement efforts. By engaging PwCF/caregivers and clinicians as XoC Champions in a community of practice, response rates will increase, and results will allow for co-production of improvements in the quality and experience of care.

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