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Care coordination (CC) facilitates access to resources/services for children/youth with special health care needs (CYSHCN). We conducted a cross-sectional analysis of the 2009-2010 National Survey of CSHCN to examine socioeconomic factors related to report of receiving adequate CC services for CYSHCN. Descriptive statistics were used to describe sociodemographic characteristics of respondents and examine socioeconomic factors. Receiving adequate CC varied by socioeconomic variables including income (100% to 199% federal poverty line [FPL]; aOR [adjusted odds ratio] = 0.848; 95% CI [confidence interval] = 0.722-0.997; P < .05), insurance (uninsured; aOR = 0.446; 95% CI = 0.326-0.609; P < .0001), and marital status (never married; aOR = 0.79; 95% CI = 0.64-0.97; P < .05). More families reporting adequate CC had private insurance, non-Hispanic white ethnicity, income >400% federal poverty level, and 2-parent households. Findings suggest unmet needs in terms of adequate access or knowledge leading to insufficient provision of CC for families with the greatest needs. Further analysis identifying specific deficits and implementing strategies to address these disparities is warranted.

Objective 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. Methods 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. Results 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. Conclusions 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.

This study sought to understand caregiver needs of children with tracheostomies (CWT) living at home and inform development of standardized tracheostomy simulation training curricula. Long-term goals are decreasing hospital readmissions following tracheostomy placement and improving family experiences while implementing a medical home model. We recruited caregivers of CWT and conducted semistructured interviews, subsequently recorded, transcribed, and analyzed for emerging themes using NVivo. Demographic data were collected via quantitative surveys. Twenty-seven caregivers participated. Emerging themes included the following: (1) caregivers felt overwhelmed, sad, frightened when learning need for tracheostomy; (2) training described as adequate, but individualized training desired; (3) families felt prepared to go home, but transition was difficult; (4) home nursing care fraught with difficulty and yet essential for families of CWT. Families of CWT have specific needs related to discharge training, resources, support, and home nursing. Provider understanding of caregiver needs is essential for child well-being, patient-/family-centered care, and may improve health outcomes.

We analyzed findings from the 2009-2010 National Survey of Children with Special Health Care Needs to identify associations between families with children and youth with special health care needs (CYSHCN) reporting adequate care coordination (CC) with family-provider relations, shared decision making (SDM), and child outcomes. Eligible subjects were the 98% of families asked about CC, service use, and communication. Bivariate analysis using χ2tests were performed on binary outcome variables to determine the strength of the associations between CC and independent and dependent variables. Weighted, multivariate logistic regression models were constructed to assess independent associations of adequate CC with child outcomes and associations of SDM on adequate CC. Among families of CYSHCN asked about CC, 72% reported receiving help with CC. Of these, 55% reported receiving adequate CC. Family report of adequate CC was favorably associated with family-provider relations, child outcomes, and report of provider participation in SDM.

Asthma, the most common chronic condition among children, accounts for significant healthcare utilization and impact on quality of life. Care coordination in a medical home is considered standard practice, but has not been rigorously evaluated.We initiated this pilot study of children/young adults with asthma (n = 967), ages: birth to 24 years, receiving care from a subset of pediatric practices (n = 20) participating in the Pennsylvania Medical Home Initiative, Educating Practices in Community-Integrated Care (92 practices statewide). We hypothesized children and youth with asthma receiving care coordination in the context of a formal medical home program would experience favorable associations with healthcare utilization and quality of life measures.A total of 9240 care coordination encounters for this cohort of children/youth occurred over 100 days. The average length of care coordination encounter was 20.7 minutes. The most common care coordination activity was referral management (21%) and the care coordinator in the practice most often contacted parent/family and specialists (75%). Children with more severe asthma had more hospitalizations and emergency department (ED) visits than children with less severe asthma. There was a significant decrease in school absences, ED visits and acute care visits for children/youth with asthma with increasing length of time in a medical home program (p 0.05).Care coordination for children/youth with asthma is feasible and may yield improvements in healthcare utilization, expenditures and quality of life. Larger-scale implementation of care coordination and medical home models for children/youth with asthma and other diagnoses are warranted.

Objective. The prevalence of childhood obesity is increasing in the United States. However, it has been difficult to help children successfully lose weight and maintain weight loss. Parental involvement in this effort is important. Currently, little is known about parents’ readiness to make behavior changes to help their children lose weight. The objective of this study was to describe demographic factors and parental perceptions associated with parents’ readiness to make weight-reducing lifestyle changes for their overweight and at-risk-for-overweight children. Methods. A total of 151 parents of children who were aged 2 to 12 years and had BMIs ≥85th percentile for age and gender completed a 43-item self-administered questionnaire. Parental stage of change, defined as precontemplation stage, contemplation stage, and preparation/action stage, was determined using an algorithm involving current parental practices and future intentions. Parents in the preparation/action stage were considered to be ready to make behavior changes to help their child lose weight. Maximum-likelihood multinomial logistic regression was used to identify demographics and perceptions associated with parental stage of change. Results. Sixty-two percent of the children had a BMI ≥95th percentile. Their mean age was 7.5 years, and 53% were male. Of the 151 parents, 58 (38%) were in the preparation/action stage of change, 26 (17%) were in the contemplation stage, and 67 (44%) were in the precontemplation stage. Factors associated with being in the preparation/action stage of change were having overweight or older (≥8 years) children, believing that their own weight or child’s weight was above average, and perceiving that their child’s weight was a health problem. After controlling for multiple factors, having an older child (odds ratio [OR]: 2.99; 95% confidence interval [CI]: 1.18–7.60), believing that they themselves were overweight (OR: 3.45; 95% CI: 1.36–8.75), and perceiving that their child’s weight was a health problem (OR: 9.75; 95% CI: 3.43–27.67) remained significantly associated with being in the preparation/action stage of change. Conclusions. Several demographic factors and personal perceptions are associated with a parent’s readiness to help his or her child lose weight. Knowledge of these factors may be beneficial to providers and program developers when addressing pediatric overweight with parents and initiating new interventions.