Assessment of families' experience with care integration within an aerodigestive program.

ABSTRACT

OBJECTIVES: The objective of this study was to assess if enrollment in a pediatric multidisciplinary aerodigestive program significantly impacted families' experiences with care integration. METHODS: A previously validated 48-question Pediatric Integrated Care Survey (PICS) was administered in a cross-sectional manner to both new (new-ADC) and established (est-ADC) patients presenting for an outpatient Aerodigestive Center visit at Boston Children's Hospital. Survey results were grouped into the following five care coordination domains (1) access to care, (2) care goal creation/planning, (3) family impact, (4) communication with health care providers, and (5) team functioning. Families were asked to rate their care integration experiences in the prior 12 months using yes/no and Likert-based questions. Comparisons were analyzed using logistic regression. Factor analysis was also performed. RESULTS: Ninety patient families were surveyed 54 (60%) est-ADC patients and 36 (40%) new-ADC patients. Est-ADC patients reported higher levels of experience with team functioning, provider awareness of prior testing, provider communication, and access to alternative methods of communication. Self-identified non-White patients reported lower satisfaction in team functioning and provider understanding of their child's long-term care plan. No significant differences in care integration experiences before and after the onset of the coronavirus pandemic were seen. CONCLUSIONS: Patients enrolled in aerodigestive centers experienced improved care integration, most significantly in provider communication and team functioning. Despite these improvements, self-identified non-White families reported a lower care integration experience.