Family Experience of Caregiver Burden and Health Care Usage in a Statewide Medical Home Program

To evaluate family-reported caregiver experiences and health care utilization of patients enrolled in the Pennsylvania Medical Home Program (PA-MHP) statewide practice network and compare results to PA-MHP practices' Medical Home Index (MHI) scores. We hypothesized families enrolled in higher-scoring patient-and-family-centered medical homes (PCMH) on completed MHIs would report decreased caregiver burden and improved health care utilization.

We analyzed surveys completed by families receiving care coordination services in PA-MHP's network and each practice's mean MHI score. A total of 3221 caregivers completed surveys evaluating hours spent coordinating care/week, missed school/workdays, sick visits, and emergency department (ED) visits. A total of 222 providers from 54 participating PA-MHP practices completed the nationally recognized MHI. Family/practice demographics were collected. We developed multivariate logistic regression models assessing independent associations among family survey outcomes and corresponding practices' MHI scores.

Families enrolled in high-scoring PCMHs had decreased odds of spending >1 h/wk coordinating care (odds ratio [OR] 0.82, adjusted OR [aOR]: 0.70, 95% confidence interval [CI] 0.55-0.90), missing workdays in the past 6 months (OR 0.82, aOR: 0.72, 95% CI 0.69-0.97), and ED visits in the past 12 months (OR 0.83, aOR: 0.81, 95% CI 0.65-0.99) in comparison to families enrolled in lower-scoring PCMHs. Families enrolled in higher-scoring PCMHs did not report fewer sick visits despite fewer ED visits, indicating more appropriate health care utilization. High-scoring PCMHs had lower percentages of publicly insured and low-income children.

Higher-scoring PCMHs are associated with decreased caregiver burden and improved health care utilization across diverse PA practices. Future studies should evaluate interventions uniformly improving PCMH quality and equity.