Validation of a Parent-Reported Experience Measure of Integrated Care

Abstract

OBJECTIVES: The objectives of this study were to design and validate a survey measuring the parents’ and caregivers’ experiences of integration of their child’s care across providers. METHODS: After review of the literature on care coordination and integration, we solicited input regarding care experiences from focus groups of families with children with chronic conditions. These data informed a 95-item pilot survey that included elements from a care integration measure designed for adult care experiences. The survey was then administered to parents of children who had had at least 1 primary care appointment and 2 specialty care appointments in the previous 12 months. Psychometric analyses were used to establish scales through exploratory factor analysis, internal consistency using Cronbach’s α, test–retest reliability using Spearman’s rank correlation coefficient, and known-group validity according to χ2 tests. All research activities were institutional review board approved. RESULTS: The pilot survey was completed as either a Web or mail survey by 255 participants. After excluding nonrating or screening questions and items not applicable to a large percentage of participants, 26 experience items were included in the exploratory factor analysis. The final survey contained 19 experience items in 5 scales: access, communication, family impact, care goal creation, and team functioning. Psychometric analyses supported these 5 scales. CONCLUSIONS: This project developed and validated a survey with 19 experience items, plus additional demographic and health needs and usage items. The Pediatric Integrated Care Survey can be used in quality improvement efforts to measure family-reported experience of pediatric care integration.