Parent-reported outcomes of comprehensive care for children with medical complexity.

The Medical Home Clinic for Special Needs Children (MHCL) at Arkansas Children's Hospital provides comprehensive care oversight for children with medical complexity (CMC). The objective of this study is to evaluate parent perceptions of health care delivery outcomes after 12 months of enrollment in the MHCL. This is a prospective cohort study of parents of MHCL patients, who completed surveys at initial and 12-month visits. Surveys assessed parent health, child health and function, family stress, and overall satisfaction, using previously validated measures and scales. Paired analyses examined differences in measures between baseline and 12 months. One-hundred and twenty of 174 eligible parents completed the follow-up survey at 12 months. Respondents were 63% White/Caucasian, 90% biological parent, and 48% with an annual family income < $20,000. From baseline to 12 months, a greater number of respondents reported having a care plan (53% vs. 85%, p < .001); fewer respondents needed help with care coordination (78% vs. 31%, p < .001). No changes were seen in reports of having emotional needs met. Parents reported a decline in the physical subscale of the SF-12 Health-Related Quality of Life measure (49.1 vs. 46.4, p < .01), with those parents with ≥ 1 additional child with special needs reporting a marked decline (49.2 vs. 42.5, p < .001). No other changes in family impact were found. We conclude that comprehensive care oversight may improve care coordination for parents of CMC, but no association with improved parent health was found. Future studies should identify the factors that influence parental burden and tailor clinical interventions to address such factors.