Abstract
OBJECTIVE: Ensuring high-quality care coordination for children with medical complexity (CMC) could yield significant health and economic benefits because they account for one-third of pediatric health care expenditures. The objective of this study was to develop and field test the Family Experiences with Coordination of Care (FECC) survey, which facilitates assessment of 20 new caregiver-reported quality measures for CMC. METHODS: We identified caregivers of Medicaid-insured CMC aged 0 to 17 years in Minnesota and Washington state, categorized by the Pediatric Medical Complexity Algorithm as having complex chronic disease. Eligible caregivers had CMC with at least 4 visits to health care providers participating in Medicaid in 2012. Caregivers were randomized to telephone or mixed mode (mail with telephone follow-up). Survey administration and data were collected in 2013. RESULTS: Twelve hundred nine caregivers responded to the FECC survey (response rate, 41%; 36% via telephone only, 46% via mixed mode; P < .001). Among CMC with a hospitalization, caregivers were invited to join hospital rounds in 51% of cases. Seventy-two percent of caregivers reported their child had a care coordinator; among these, 96% reported knowing how to access the care coordinator. Few children had written shared care plans (44%) or emergency care plans (20%). Only 10% of adolescents had a written transition care plan. Scores were lower from mixed mode respondents than from telephone-only respondents for some measures. CONCLUSIONS: The FECC survey enables the evaluation of care coordination quality for CMC. Both survey modes were feasible to implement, but mixed mode administration produced a higher response rate.