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.

Individual and practice characteristics associated with physician provision of recommended care for children with special health care needs.

OBJECTIVE: To examine physician and practice characteristics associated with recommended care practices for children with special health care needs (CSHCN). METHODS: A survey of primary care physicians (PCPs) in Arkansas with a Medicaid caseload of ≥100 children was conducted. Predictor variables included physician specialty field, demographics, practice type, and percentage of patients with public insurance. Multivariate regression analyses described predictors associated with recommended care practices informed by literature. RESULTS: Of 565 mailed surveys, 203 (36%) were returned. Solo/2-person practice was associated with recommended care practices, including written care plan (adjusted odds ratio [AOR] = 9.67, 95% confidence interval [CI] = 2.61-35.8), providing extra time (AOR = 3.52, 95% CI = 1.47-8.43), and providing community referrals (AOR = 3.05, 95% CI = 1.33-7.02). Female gender was associated with extra time (AOR = 2.26, 95% CI = 1.07-4.78) and providing community referrals (AOR = 2.83, 95% CI = 1.30-6.18). CONCLUSION: Future studies should examine characteristics of smaller practices that drive implementation of recommended care practices.

Increasing prevalence of medically complex children in US hospitals.

OBJECTIVE: In this study we used national data to determine changes in the prevalence of hospital admissions for medically complex children over a 15-year period. PATIENTS AND METHODS: Data from the Nationwide Inpatient Sample, a component of the Healthcare Cost and Utilization Project, was analyzed in 3-year increments from 1991 to 2005 to determine national trends in rates of hospitalization of children aged 8 days to 4 years with chronic conditions. Discharge diagnoses from the Nationwide Inpatient Sample were grouped into 9 categories of complex chronic conditions (CCCs). Hospitalization rates for each of the 9 CCC categories were studied both individually and in combination. Trends of children hospitalized with 2 specific disorders, cerebral palsy (CP) and bronchopulmonary dysplasia, with additional diagnoses in more than 1 CCC category were also examined. RESULTS: Hospitalization rates of children with diagnoses in more than 1 CCC category increased from 83.7 per 100,000 (1991-1993) to 166 per 100 000 (2003-2005) (P[r]<.001). The hospitalization rate of children with CP plus more than 1 CCC diagnosis increased from 7.1 to 10.4 per 100 000 (P=.002), whereas the hospitalization rates of children with bronchopulmonary dysplasia plus more than 1 CCC diagnosis increased from 9.8 to 23.9 per 100,000 (P<.001). CONCLUSIONS: Consistent increases in hospitalization rates were noted among children with diagnoses in multiple CCC categories, whereas hospitalization rates of children with CP alone have remained stable. The relative medical complexity of hospitalized pediatric patients has increased over the past 15 years.