Satisfaction With Care Coordination for Families of Children With Disabilities.

INTRODUCTION: Children with disabilities have significant health care needs, and receipt of care coordinator services may reduce caregiver burdens. The present study assessed caregivers' experience and satisfaction with care coordination. METHOD: Caregivers of Medicaid-enrolled children with disabilities (n = 2,061) completed a survey (online or by telephone) collecting information on the caregivers' experiences and satisfaction with care coordination using the Family Experiences with Coordination of Care questionnaire. RESULTS: Eighty percent of caregivers with a care coordinator reported receiving help making specialist appointments, and 71% reported help obtaining community services. Caregivers who reported that the care coordinator helped with specialist appointments or was knowledgeable, supportive, and advocating for children had increased odds of satisfaction (odds ratio = 3.46, 95% confidence interval = [1.01, 11.77] and odds ratio = 1.07, 95% confidence interval = [1.03, 1.11], respectively). DISCUSSION: Findings show opportunities for improving care coordination in Medicaid-enrolled children with disabilities and that some specific elements of care coordination may enhance caregiver satisfaction with care.

Kawasaki Disease Substantially Impacts Health-Related Quality of Life.

OBJECTIVE: To prospectively evaluate the acute impact of Kawasaki disease (KD) on health-related quality of life (HRQoL) and to assess deterioration in the HRQoL experienced by children with KD compared with other childhood diseases. STUDY DESIGN: We merged the Outcomes Assessment Program database obtained prospectively with the existing KD database and queried for KD admissions between 1 month and 13 years of age. HRQoL was evaluated with the parent-proxy Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core and Infant Scales. We compared the KD HRQoL results with those obtained from newly diagnosed patients with cancer and pneumonia, matched for age, sex and race. PedsQL total scores over time were assessed with ANCOVA models, adjusted for matching variables and PedsQL score prior to admission. RESULTS: We identified 89 patients with KD and compared 65 subjects with an equal number with pneumonia and with 67 subjects with newly diagnosed cancer. Patients with demonstrated lower PedsQL total score on admission and suffered a significantly greater HRQoL decline from baseline to admission than the other groups. KD diagnostic subtype (complete or incomplete) and coronary artery dilatation were not associated with HRQoL outcomes. However, non-intravenous immunoglobulin responders showed greater HRQoL decline than responders (P = .03). CONCLUSIONS: Children with KD suffer acute and significant HRQoL impairment exceeding that of children newly diagnosed with cancer. Lack of immediate treatment response may exert an additional HRQoL burden, whereas KD subtype and coronary artery dilatation do not.

Influence of race and socioeconomic status on engagement in pediatric primary care.

OBJECTIVE: To understand the association of race/ethnicity with engagement in pediatric primary care and examine how any racial/ethnic disparities are influenced by socioeconomic status. METHODS: Visit videos and parent surveys were obtained for 405 children who visited for respiratory infections. Family and physician engagement in key visit tasks (relationship building, information exchange, and decision making) were coded. Two parallel regression models adjusting for covariates and clustering by physician were constructed: (1) race/ethnicity only and (2) race/ethnicity with SES (education and income). RESULTS: With and without adjustment for SES, physicians seeing Asian families spoke 24% fewer relationship building utterances, compared to physicians seeing White, non-Latino families (p<0.05). Latino families gathered 24% less information than White, non-Latino families (p<0.05), but accounting for SES mitigates this association. Similarly, African American families were significantly less likely to be actively engaged in decision making (OR=0.32; p<0.05), compared to White, non-Latino families, but adjusting for SES mitigated this association. CONCLUSION: While engagement during pediatric visits differed by the family's race/ethnicity, many of these differences were eliminated by accounting for socioeconomic status. PRACTICE IMPLICATIONS: Effective targeting and evaluation of interventions to reduce health disparities through improving engagement must extend beyond race/ethnicity to consider socioeconomic status more broadly.