Debra Lotstein

Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs.

Objective. To describe the proportion of youth with special health care needs (YSHCN) who are receiving services for medical transitions and to describe which sociodemographic and health care-related factors are associated with receiving transition services. Methods. We analyzed responses to questions about medical transitions from the 2001 National Survey of Children With Special Health Care Needs (NS-CSHCN). Parents or guardians of youth aged 13 to 17 years who screened positive for the survey were asked (1) whether they had discussed with health care providers how their childs health care needs might change in adulthood, (2) if they had a plan to address these changing needs, and (3) if their childs health care providers had discussed having their child eventually see a doctor who treats adults. Bivariate and multivariate associations were estimated to identify sociodemographic and health care factors related to receiving medical-transition services. Results. Overall, 50% of respondents had discussed their childs changing health care needs with their physicians, although significantly fewer Hispanic youth compared with other youth reported these discussions. Youth who met criteria for a medical home were more likely to have discussed changing needs and to have a plan addressing these needs. Of those who had discussed changing needs, 59% had a plan to address these needs and ∼42% had reported discussing shifting care to adult-oriented providers. Younger teens and non-Hispanic black children were less likely to have discussed changing providers. Fifteen percent of YSHCN met the Maternal and Child Health Bureaus core outcome for medical transitions. A multivariate logistic-regression model found that older age and having a medical home were significantly associated with increased odds of meeting the outcome measure. Conclusion. The proportion of YSHCN meeting the medical-transition outcome measure is quite low, particularly for youth from ethnic minorities. Higher rates are seen for older teens and those receiving care within a medical home. Significant efforts will be required to meet the proposed goal of all YSHCN receiving the services necessary to transition to adult health care.

Adolescent Transition to Adult Care in Solid Organ Transplantation: A consensus conference report

Transition of care from pediatric to adult‐oriented health care providers is difficult for children with special health care needs. Children who have received solid organ transplants and their providers experience the same difficulties and frustrations as children with other major illnesses. A consensus conference was organized by several transplant organizations to identify major issues in this area and recommend possible approaches to easing the process of transition for solid organ transplant recipients. This report summarizes the discussions and recommendations.

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.

Current Status of Transition Preparation Among Youth With Special Needs in the United States

OBJECTIVE: To examine current US performance on transition from pediatric to adult health care and discuss strategies for improvement. METHODS: The 2009–2010 National Survey of Children with Special Health Care Needs is a nationally representative sample with 17 114 parent respondents who have youth with special health care needs (YSHCN) ages 12 and 18. They are asked about transition to an adult provider, changing health care needs, increasing responsibility for health care needs, and maintaining insurance coverage. We analyzed the association of selected characteristics with successful transition preparation. RESULTS: Overall, 40% of YSHCN meet the national transition core outcome. Several factors are associated with transition preparation, including female gender; younger age; white race; non-Hispanic ethnicity; income ≥400% of poverty; little or no impact of condition on activities; having a condition other than an emotional, behavioral, or developmental condition; having a medical home; and being privately insured. CONCLUSIONS: Most YSHCN are not receiving needed transition preparation. Although most providers are encouraging YSHCN to assume responsibility for their own health, far fewer are discussing transfer to an adult provider and insurance continuity. Although changes in sample design limit trend analysis, there have been no discernible improvements since this transition outcome was measured in the 2005–2006 National Survey of Children with Special Health Care Needs. The 2011 release of the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians clinical recommendations on transition, new transition tools, and the spread of medical home should stimulate future improvements in transition performance.

Transition From Pediatric to Adult Care for Youth Diagnosed With Type 1 Diabetes in Adolescence

OBJECTIVE: Youth with type 1 diabetes mellitus are at risk for poor glycemic control as they age into adulthood. The aim of this study was to describe sociodemographic and clinical correlates of poor glycemic control associated with the transfer of care from pediatric to adult diabetes providers among a cohort of youth with type 1 diabetes diagnosed in adolescence. METHODS: Analyses included 185 adolescent participants with recently diagnosed type 1 diabetes in the SEARCH for Diabetes in Youth Study with pediatric care at baseline who were age ≥18 years at follow-up. Demographic and clinical factors were measured by survey and laboratory results. Survival analysis was used to estimate the age of transition. Logistic regression analysis assessed the association of demographic and clinical factors with the transition of care and poor glycemic control at follow-up. RESULTS: Fifty-seven percent of participants had transitioned to adult diabetes care providers by the follow-up visit. The estimated median age of transition of care was 20.1 years (95% confidence interval 19.8–20.4). Older age, lower baseline glycosylated hemoglobin, and less parental education were independently associated with increased odds of transition. The odds of poor glycemic control at follow-up were 2.5 times higher for participants who transitioned to adult care compared with those who remained in pediatric care. CONCLUSIONS: Transferring from pediatric to adult care, experienced by more than half the sample, was associated with an increased risk of poor glycemic control at follow-up. These findings suggest that young adults need additional support when moving to adult care.

Rethinking Well-Child Care in the United States: An International Comparison

BACKGROUND. The increasing scope of health supervision recommendations challenges well-child care delivery in the United States. Comparison of the United States with other countries’ delivery systems may highlight different assumptions as well as structural approaches for consideration. OBJECTIVE. Our goal was to describe the process of well-child care delivery in industrialized nations and compare it to the US model of child health care. METHODS. Literature reviews and international experts were used to identify 10 countries with unique features of well-child care delivery for comparison to the United States. Key-informant interviews using a structured protocol were held with child health experts in 10 countries to delineate the structural and practice features of their systems. Site visits produced additional key informant data from 5 countries (Netherlands, England, Australia, Sweden, and France). RESULTS. A primary care framework was adapted to analyze structural and practice features of well-child care in the 10 countries. Although well-child care content is similar, there are marked differences in the definitions of well-child care and the scope of practice of primary care professionals and pediatricians specifically who provide this care across the 10 countries. In contrast to the United States, none of the countries place all well-child care components under the responsibility of a single primary care provider. Well-child care services and care for acute, chronic, and behavioral/developmental problems are often provided by different clinicians and within different service systems. CONCLUSIONS. Despite some similarities, well-child care models from other countries differ from the United States in key structural features on the basis of broad financing differences as well as specific visions for effective well-child care services. Features of these models can inform child health policy makers and providers in rethinking how desired improvements in US well-child care delivery might be sought.

Access to Care for Youth with Special Health Care Needs in the Transition to Adulthood

PURPOSE To describe access to care and identify factors associated with access for low-income young adults who aged out of a public program for children with special health care needs (CSHCN). METHODS This was a cross-sectional survey of graduates of the Title V CSHCN program in one California county. Subjects were 77 graduates (55% female) aged 21-24 years with ongoing health care needs. Measures of access to care included having the following: a regular source of care for the main health condition; all needed care since turning 21 years of age; any delayed or forgone care in the past 6 months; health insurance; and continual insurance since turning age 21. Individuals lacking any one access measure were defined as experiencing an adverse transition event. RESULTS Of the subjects, 24% lacked a usual source of health care, 27% had gone without some needed health care since turning 21, and 39% had delayed needed care. Although 10% of respondents were uninsured at the time of the survey; 40% had a gap in insurance coverage since turning age 21. Overall, 65% reported at least one adverse transition event affecting access to care. Factors associated with experiencing no adverse transition event were receiving Supplemental Security Income (SSI, p = .007), having received special education services (p = .003), and having been born with the main health condition (p = .013). CONCLUSIONS Insurance gaps and delayed care are prevalent among these low-income young adults despite ongoing health problems. Greater transition support might improve access by linking them with a usual source of care, identifying insurance options, and encouraging regular use of care.

The Transition to Adult Health Care for Youth With Special Health Care Needs: Do Racial and Ethnic Disparities Exist?

Although the transition to adulthood for youth with special health care needs (YSHCN) has been gathering attention, the impact of racial and ethnic disparities on this process has been relatively unexamined. In this review, we explore evidence of disparities in the transition to adulthood for YSHCN, which is important because the problems that YSHCN face in transitioning to adulthood are, in large part, caused by interrupted access to high-quality health care and minority YSHCN and adults have many well-described gaps in access to quality care. Understanding the disparities in the transition process is essential to ensure that interventions designed to improve this transition will meet the needs of this high-risk population. We reviewed research on transition preparation and outcomes for YSHCN to find evidence of racial and ethnic disparities. The results of our review indicate that few YSHCN are receiving adequate transition preparation, and some evidence indicates that this situation is worse for racial and ethnic minorities. Furthermore, young adults, including YSHCN, have poorer access to care than children. Moreover, at some ages, this age-related decline in access is worse for Hispanic and black young adults than for others. Finally, low-income YSHCN are at higher risk than other YSHCN of experiencing gaps in access to care as they age into adulthood. Possible causes of racial and ethnic disparities in health care transitions are related to insurance, living in low-income communities, and sociocultural factors. Significant efforts in research, policy change, advocacy, and education of providers and families are needed to ensure optimal transition preparation and adult outcomes for YSHCN from all racial and ethnic backgrounds.

Change in Health Status and Access to Care in Young Adults With Special Health Care Needs: Results From the 2007 National Survey of Adult Transition and Health

BACKGROUND Despite over 500,000 adolescents with special health care needs transitioning to adulthood each year, limited information is available on their health status or their access to care after transition. OBJECTIVE To describe the change in health status and access to care of a nationally sampled, longitudinal cohort of young adults with special health care needs (ASHCN). METHODS We analyzed follow-up data collected in the 2007 Survey of Adult Transition and Health on young adults who were 14-17 years of age when their parents participated in the 2001 National Survey of Children with Special Health Care Needs. We describe changes in access to care and health status over time, and used logistic regression to identify characteristics that were associated with declining health status in this cohort. RESULTS 1,865 participants, aged 19-23 years, completed the Survey of Adult Transition and Health. Between 2001 and 2007, there was a 3.6 fold increase in the proportion experiencing delayed or forgone care; 10% reported a decline in health status. There was a 7.7-fold increase in the proportion reporting no insurance. In regression analysis, factors associated with declining health status between 2001 and 2007 included underlying disease severity and delayed or forgone care in young adulthood. CONCLUSIONS We found significant deterioration in insurance coverage, usual source of care and receiving timely health care as ASHCN aged into adulthood, and that this was associated with decline in health status. Our findings suggest that further population-based analyses of health outcomes are needed to plan for interventions to assist this vulnerable population.

Using Quality Improvement Methods To Improve Public Health Emergency Preparedness: PREPARE For Pandemic Influenza

Many public health departments seek to improve their capability to respond to large-scale events such as an influenza pandemic. Quality improvement (QI), a structured approach to improving performance, has not been widely applied in public health. We developed and tested a pilot QI collaborative to explore whether QI could help public health departments improve their pandemic preparedness. We demonstrated that this is a promising model for improving public health preparedness and may be useful for improving public health performance overall. Further efforts are needed, however, to encourage the robust implementation of QI in public health.