Reem M. Ghandour

The Medical Home: Health Care Access and Impact for Children and Youth in the United States

OBJECTIVE: The medical home concept encompasses the elements of pediatric care considered essential for all children. We describe here the characteristics of children with medical homes and the relationship between presence of a medical home and selected health care outcomes by using new data from the 2007 National Survey of Childrens Health (NSCH). METHODS: We used a medical home measure comprising 5 components: having a usual source of care; having a personal physician or nurse; receiving all needed referrals for specialty care; receiving help as needed in coordinating health and health-related care; and receiving family-centered care. A total of 83 448 children aged 1 to 17 years had valid data for all applicable medical home components. The NSCH is a random-digit-dial population-based telephone survey. RESULTS: In 2007, 56.9% of US children aged 1 to 17 years received care in medical homes. Younger children were more likely to have a medical home than their older counterparts. Substantial racial/ethnic, socioeconomic, and health-related disparities were present. Children who received care in medical homes were less likely to have unmet medical and dental needs and were more likely to have annual preventive medical visits. CONCLUSIONS: Approximately half of the children in the United States have access to all components of a pediatric medical home. Because the medical home is increasingly promoted as the standard for provision of high-quality comprehensive health care, these findings reinforce the need to continue and expand federal, state, and community efforts to ensure that all children have access to this model of care.

Planning for Health Care Transitions: Results From the 2005–2006 National Survey of Children With Special Health Care Needs

OBJECTIVES. Many youth with special health care needs have difficulties transferring to adult medical care. To address this, the Maternal and Child Health Bureau has made receipt of transition services a core performance outcome for community-based systems of care for youth with special health care needs. In this article we describe the results for the transition core outcome from the 2005–2006 National Survey of Children With Special Health Care Needs. We also describe changes in the measurement strategy for this outcome since the first National Survey of Children With Special Health Care Needs in 2001. METHODS. In the nationally representative, cross-sectional 2005–2006 National Survey of Children With Special Health Care Needs, parent or guardian respondents of 18198 youth with special health care needs (aged 12–17) were asked if they have had discussions with their childs health care providers about (1) future adult providers, (2) future adult health care needs, (3) changes in health insurance, and (4) encouraging their child to take responsibility for his or her care. All 4 components had to be met for the youth to meet the overall transition core outcome. Those who had not had transition discussions reported if such discussions would have been helpful. RESULTS. Overall, 41% of youth with special health care needs met the core performance outcome for transition. Forty-two percent had discussed shifting care to an adult provider, 62% discussed their childs adult health care needs, and 34% discussed upcoming changes in health insurance. Most (78%) respondents said that providers usually or always encourage their child to take responsibility for his or her health. Non-Hispanic black or Hispanic race/ethnicity, lower income level, not speaking English, and not having a medical home reduced the odds of meeting the transition core outcome. CONCLUSIONS. Current performance on the transition core outcome leaves much room for improvement. Many parents feel that having transition-related discussions with their health care providers would be helpful. Future clinical and policy-level research should be directed at identifying barriers to, and recommending content for, health transition discussions.

Geographic Disparities in Access to the Medical Home Among US CSHCN

OBJECTIVES: In this study we examined geographic disparities in medical home access among US children with special health care needs (CSHCN) aged 0 to 17 years. METHODS: The 2005–2006 National Survey of Children With Special Health Care Needs was used to estimate prevalence and odds of not having a medical home and 5 component outcomes according to state. Logistic regression was used to examine individual-level and state-level determinants of access. RESULTS: Medical home access varied substantially across geographic areas. CSHCN in Alaska, Arizona, Washington, DC, Florida, Illinois, Massachusetts, New Jersey, Nevada, and Virginia had at least 50% higher adjusted odds of not having a medical home than CSHCN in Iowa. The adjusted prevalence of CSHCN lacking a medical home varied from a low of 46% in Iowa and Ohio to a high of 59% in Alaska and 61% in New Jersey. CSHCN in several western and southwestern states experienced greater problems with access to a personal doctor/nurse, a usual source of care, specialty care referrals, care coordination, and family-centered care. Adjustment for age, gender, race/ethnicity, household socioeconomic status, language use, insurance coverage, and functional limitation reduced state disparities in access. CSHCN in states with higher immigrant and non–English-speaking populations had significantly lower medical home access. Increases in state health care expenditure and infrastructure and Medicaid/State Childrens Health Insurance Program eligibility were associated with increased access to a personal doctor/nurse. CONCLUSIONS: Although individual-level sociodemographic and state-level health policy variables are important predictors of access, substantial geographic disparities remain, with CSHCN in several western and northeastern states at high risk of not having a medical home.

Mental Health Outcomes in US Children and Adolescents Born Prematurely or with Low Birthweight

We examined the effects of prematurity (<37 weeks of gestation) and low birthweight (<2500 g) on mental health outcomes among US children aged 2–17 years. The 2011-2012 National Survey of Childrens Health (N = 95,677) was used to estimate prevalence of parent-reported mental health problems in children. Prevalence of mental disorders was 22.9% among children born prematurely, 28.7% among very-low-birth-weight (<1500 g) children, and 18.9% among moderately low-birth-weight (1500–2499 g) children, compared with 15.5% in the general child population. Compared to those born full term, children born prematurely had 61% higher adjusted odds of serious emotional/behavioral problems, 33% higher odds of depression, and 58% higher odds of anxiety. Children born prematurely had 2.3 times higher odds of autism/ASD, 2.9 times higher odds of development delay, and 2.7 times higher odds of intellectual disability than term children. Very-low-birth-weight children had 3.2 times higher odds of autism/ASD, 1.7 times higher odds of ADD/ADHD, 5.4 times higher odds of development delay, and 4.4 times higher odds of intellectual disability than normal-birth-weight children. Social factors were significant predictors of mental disorders in both premature/low-birth-weight and term/normal-birth-weight children. Neurodevelopmental conditions accounted for the relationship between prematurity and depression/anxiety/conduct problems. Prematurity and low birthweight are significant risk factors for mental health problems among children.

Screening and counseling for Intimate Partner Violence: a vision for the future.

We describe a vision of screening and intervention for Intimate Partner Violence informed by deliberations during the December 2013 Intimate Partner Violence Screening and Counseling Research Symposium and the resultant manuscripts featured in this special issue of the Journal of Womens Health. Our vision includes universal screening and intervention, when indicated, which occurs routinely as part of comprehensive physical and behavioral health services that are both patient centered and trauma informed. Areas for future research needed to realize this vision are discussed.

Prevalence and Correlates of Internalizing Mental Health Symptoms Among CSHCN

OBJECTIVES: This study provides nationally representative prevalence estimates of internalizing mental health symptoms among children with special health care needs (CSHCN) and identifies significant covariates of these symptoms by using multivariate regression. Internalizing symptoms include feeling anxious and depressed. METHODS: Data were obtained from the 2005–2006 National Survey of Children with Special Health Care Needs, a nationally representative, parent-reported, cross-sectional survey of 40 465 CSHCN. The presence of internalizing mental health symptoms was assessed by using 2 binary items capturing whether a child had or experienced difficulty with depression, anxiety, disordered eating, or other emotional problems. The odds of experiencing internalizing symptoms were assessed by using multivariate regression, controlling for sociodemographic, health-related, and burden-related covariates. RESULTS: A total of 31.9% of CSHCN 3 to 17 years of age experienced internalizing mental health symptoms. Multivariate logistic regression showed internalizing symptoms to be strongly associated with female gender, older age, and frequent activity limitations, as well as externalizing mental health symptoms and conditions with behavioral components. Children with behavior problems had 6 times the odds of internalizing symptoms (adjusted odds ratio [aOR]: 5.95 [95% confidence interval [CI]: 5.30–6.69]), whereas children with autism spectrum disorder had 3 times the odds (aOR: 3.00 [95% CI: 2.39–3.77]). Increased odds of symptoms also were associated with frequent headaches (aOR: 1.76 [95% CI: 1.45–2.13]) and chronic pain (aOR: 1.46 [95% CI: 1.22–1.75]). Odds of symptoms were greater for children living in households that experienced employment changes or financial burdens resulting from the childrens needs. CONCLUSIONS: Internalizing mental health symptoms are common among CSHCN. Findings may help caregivers focus screening and prevention efforts for high-risk groups in this heterogeneous population.

Financial and Nonfinancial Burden Among Families of CSHCN: Changes Between 2001 and 2009–2010

OBJECTIVE We use the latest data to explore multiple dimensions of financial burden among children with special health care needs (CSHCN) and their families in 2009-2010 and changes since 2001. METHODS Five burden indicators were assessed using the 2001 and 2009-2010 National Surveys of CSHCN: past-year health-related out-of-pocket expenses of ≥

Healthy People 2010 Leading Health Indicators: How Children With Special Health Care Needs Fared

1,000 or ≥ 3% of household income; perceived financial problems; changes in family employment; and >10 hours of weekly care provision/coordination. Unadjusted and adjusted prevalence estimates were used to assess burden in 2009-2010 and calculate absolute and relative measures of change since 2001. Prevalence rate ratios for each burden type in 2009-2010 compared to 2001 were estimated by logistic regression. RESULTS Nearly half of CSHCN and their families experienced some form of burden in 2009-2010. The percentage of CSHCN living in families that paid ≥

Participation of Children with Special Health Care Needs in School and the Community

1,000 or ≥ 3% of household income out of pocket for health care rose 120% and 35%, respectively, between 2001 and 2009-2010, while the prevalence of caregiving and employment burdens declined. Relative to 2001, in 2009-2010, CSHCN who were privately insured or least affected by their conditions were 1.7 times as likely to live in families that paid ≥ 3% of household income out of pocket, while publicly insured children were 20% less likely to do so and those most severely affected were 12% more likely to do so. CONCLUSIONS Over the past decade, increases in financial burden and declines in employment and caregiving burdens were observed for CSHCN families. Public insurance expansions may have buffered increases in financial burden, yet disparities persist.

Introduction to the Special Issue of Articles from the 2007 National Survey of Children’s Health

OBJECTIVES We compared estimates for children with and without special health care needs (SHCN) at 2 time periods for national health objectives related to the Healthy People 2010 leading health indicators (LHIs). METHODS Data were from the 2003 and 2007 National Surveys of Childrens Health. Seven survey items were relevant to the LHIs and available in both survey years: physical activity, obesity, household tobacco use, current insurance, personal health care provider, past-month depressive symptoms, and past-year emergency department visits. RESULTS In 2003 and 2007, children with SHCN fared worse than those without SHCN with respect to physical activity, obesity, household tobacco exposure, depressive symptomology, and emergency department visits, but fared better on current insurance and having a personal health care provider. Physical activity and access to a personal health care provider increased for all children, whereas the absolute disparity in personal provider access decreased 4.9%. CONCLUSIONS Significant disparities exist for key population health indicators between children with and without SHCN. Analyses illustrated how population-based initiatives could be used to frame health challenges among vulnerable populations.