Validation of a Parent-Reported Experience Measure of Integrated Care.

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 χ 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.