Youth with special health care needs: transition to adult health care services.

Transition to adult services for children and youth with special health care needs (CYSHCN) has emerged as an important event in the life course of individuals with disabilities. Issues that interfere with efficient transition to adult health care include the perspectives of stakeholders, age limits on pediatric service, complexity of health conditions, a lack of experienced healthcare professionals in the adult arena, and health care financing for chronic and complex conditions. The purposes of this study were to develop a definition of successful transition and to identify determinants that were associated with a successful transition. The 2007 Survey of Adult Transition and Health dataset was used to select variables to be considered for defining success and for identifying predictors of success. The results showed that a small percentage of young adults who participated in the 2007 survey had experienced a successful transition from their pediatric care.

ASD, a psychiatric disorder, or both? Psychiatric diagnoses in adolescents with high-functioning ASD.

Varied presentations of emotion dysregulation in autism complicate diagnostic decision making and may lead to inaccurate psychiatric diagnoses or delayed autism diagnosis for high-functioning children. This pilot study aimed to determine the concordance between prior psychiatric diagnoses and the results of an autism-specific psychiatric interview in adolescents with high-functioning autism. Participants included 35 predominantly Caucasian and male verbal 10- to 17-year-olds with a confirmed autism spectrum disorder and without intellectual disability. The average age of autism spectrum diagnosis was 11 years old. Lifetime psychiatric diagnoses were established via the Autism Comorbidity Interview, developed to identify comorbid conditions within the context of autism. Autism Comorbidity Interview results were compared to parent report of prior community psychiatric diagnoses. Approximately 60% of prior psychiatric diagnoses were not supported on the Autism Comorbidity Interview; the lowest diagnostic concordance was for prior bipolar disorder and obsessive-compulsive disorder diagnoses. Although 51% of children met Autism Comorbidity Interview criteria for at least one psychiatric disorder, rates of prior diagnoses were much higher, with 77% having at least one prior psychiatric diagnosis and 60% having two or more. Although many participants met criteria for comorbid psychiatric disorders, the majority of previous psychiatric diagnoses were not supported when autism-related manifestations were systematically taken into account. These findings require replication and may not generalize to lower functioning and earlier diagnosed children with autism spectrum disorder. Results emphasize the importance of increasing awareness of the manifestations of high-functioning autism in order to improve accuracy of diagnosis and appropriateness of interventions.

Disparities in the Clinical Encounter: Virginia's African American Children with Special Health Care Needs.

This study analyzed Virginia data from the most recent National Survey of Children with Special Health Care Needs. Logistic regression models were run for six Maternal and Child Health Bureau core outcomes and included demographics, child characteristics, health care providers, and health care access variables as predictors. Race/ethnicity disparities were judged to be present if the race/ethnicity variable was a significant predictor in the final model. Examining the components of disparate outcomes, African American children were found to be less likely than their white counterparts to have a usual source for sick and preventive care and to have a personal doctor or nurse. Their parents were less likely to say that doctors spent enough time, listened carefully, were sensitive to values and customs, and made them feel like a partner. These findings emphasize the need to examine health care disparities at a state level in order to guide efforts at remediation.

Association between depression and anxiety in high-functioning children with autism spectrum disorders and maternal mood symptoms.

Research suggests that children with autism spectrum disorders (ASDs) and their relatives have high rates of depression and anxiety. However, relatively few studies have looked at both factors concurrently. This study examined the potential relationship between maternal mood symptoms and depression and anxiety in their children with ASD. Participants were 31 10- to 17-year-old children with an ASD diagnosis that was supported by gold-standard measures and their biological mothers. Mothers completed the Autism Comorbidity Interview to determine whether the child with ASD met criteria for any depressive or anxiety diagnoses and a questionnaire of their own current mood symptoms. As expected, many children with ASD met criteria for lifetime diagnoses of depressive (32%) and anxiety disorders (39%). Mothers' report of their own current mood symptoms revealed averages within the normal range, though there was significant variability. Approximately 75% of children with ASD could be correctly classified as having a depressive or anxiety disorder history or not based on maternal symptoms of interpersonal sensitivity, hostility, phobic anxiety, depression, and anxiety. The results provide preliminary evidence that maternal mood symptoms may be related to depression and anxiety in their children with ASD. Although the design did not allow for testing of heritability per se, the familial transmission patterns were generally consistent with research in typical populations. While larger follow-up studies are needed, this research has implications for prevention and intervention efforts.

Medication use among children with autism spectrum disorders.

The study characterizes the use of psychoactive medications among children and youth with autism-spectrum disorders over the course of a calendar year. Eighty-three percent of the sample had at least one drug claim during the year. Prescribed drugs came from 125 different therapeutic classes. The seven most frequently prescribed classes of psychoactive drugs were antidepressants, stimulants, tranquilizers/antipsychotics, anticonvulsants, hypotensive agents, anxiolytic/sedative/hypnotics, and benzodiazepines. The data on other relevant diagnoses indicate that children and youth are frequently treated with medication under an autism-spectrum diagnosis, even though the target symptoms may be commonly associated with other mental disorders. Age data indicate that about 70% of children with autism-spectrum disorders age 8 yr and up receive some form of psychoactive medication in a given year.

Underinsurance and key health outcomes for children with special health care needs.

OBJECTIVE: The objective was to examine the relationship between underinsurance and other core outcomes for children with special health care needs. METHODS: This study analyzed data from the National Survey of Children With Special Health Care Needs. Two alternative definitions of underinsurance, designated attitudinal and economic, were investigated. Logistic regression models in which the response variables were the child's status for each of the target core outcomes and underinsurance status was a dichotomous predictor variable were created. In addition to underinsurance status, 10 other predictor variables were included in the model. RESULTS: Underinsurance is associated with the Maternal and Child Health Bureau core outcomes for children with special health care needs related to satisfaction with care and partnering with families in decision-making, access to a medical home, community-based service delivery that is easy to use, and access to services to make transitions to adulthood. In each case, children with special health care needs who were underinsured had significantly poorer outcomes than did children who were adequately insured. CONCLUSIONS: Although these results cannot clarify the cause of poorer outcomes, there are clear negative effects associated with the problem of underinsurance. Inadequate health care coverage for children with special health care needs may save dollars in the short-term but, if other outcomes are compromised, then children, their families, and society at large may pay a price in the longer term.

Emotion perception in Asperger's syndrome and high-functioning autism: the importance of diagnostic criteria and cue intensity.

This study compared emotion perception accuracy between children with Asperger's syndrome (AS) and high-functioning autism (HFA). Thirty children were diagnosed with AS or HFA based on empirically supported diagnostic criteria and administered an emotion perception test consisting of facial expressions and tone of voice cues that varied in intensity. Participants with AS and the typically developing standardization sample of the emotion perception instrument had the same mean emotion perception accuracy, whereas participants with HFA performed significantly worse. Results also provided preliminary evidence for a difference in accuracy perceiving low-intensity tone of voice cues between participants with HFA and AS. Future research to build on these initial findings should include attention to tone of voice, underlying processing, and cue intensity.

The discriminative ability and diagnostic utility of the ADOS-G, ADI-R, and GARS for children in a clinical setting.

Recent years have seen a surge of interest in assessment instruments for diagnosing autism in children. Instruments have generally been developed and evaluated from a research perspective. The Autism Diagnostic Observation Schedule-Generic (ADOS-G), Autism Diagnostic Interview-Revised (ADI-R), and Gilliam Autism Rating Scale (GARS) have received considerable attention and are widely used. The objective of this study was to explore the diagnostic utility and discriminative ability of these tools using a clinical population of children referred to a specialty diagnostic clinic over a 3 year time span. The results indicated that the ADOS-G and ADI-R led to approximately 75 percent agreement with team diagnoses, with most inconsistencies being false positive diagnoses based on the measures. The GARS was generally ineffective at discriminating between children with various team diagnoses and consistently underestimated the likelihood of autism. The findings have important implications for the use of these measures in both research and clinical practice.

Defining underinsurance among children with special health care needs: a Virginia sample.

OBJECTIVES: The study sought to: 1) examine the national Children with Special Health Care Needs (CSHCN) survey to determine whether there are items that can serve to operationalize alternative definitions of underinsurance; 2) construct definitions from the survey items that are consistent with Structural and Economic definitions of underinsurance and devise an algorithm for determining underinsurance for each; and 3) compare these two underinsurance definitions with the Maternal and Child Health definition of inadequate insurance, a definition that takes an Attitudinal approach to the construct. METHODS: Analyses included Virginia children who were insured throughout the survey period. Survey items from the national CSHCN survey were examined to identify items related to underinsurance. Items were divided into groups corresponding to three definitions of insurance (Attitudinal, Structural, and Economic). Algorithms were established, and underinsurance rates calculated for each definition. Logistic regression models were constructed to investigate demographic characteristics related to underinsurance. RESULTS: Different percentages of Virginia CSHCN were found to be underinsured based on the definitions of Attitudinal (28.9%), Economic (25.6%), and Structural (2.9%). Eight demographic characteristics and the pervasiveness of the child's special health care needs were examined in relation to underinsurance. For the Attitudinal definition, poverty level and pervasiveness were significant predictors in the model. In the model predicting Economic underinsurance status, pervasiveness and three of the demographic characteristics significantly predicted underinsurance status. In the multivariate logistic regression model for the Structural definition, none of the predictors was significantly related to underinsurance. CONCLUSIONS: These findings demonstrate that alternative definitions of underinsurance yield dramatically different underinsurance rates. Further, even when yielding similar rates, alternative definitions may identify substantially different sets of children. The likelihood of being underinsured has a strong association with low-income status and pervasiveness of the child's special health care needs. Understanding these factors and their implications will be important when planning accessible and comprehensive health plans and care systems for CSHCN.

The neuropsychology of facial identity and facial expression in children with mental retardation.

We indirectly determined how children with mental retardation analyze facial identity and facial expression, and if these analyses of identity and expression were controlled by independent cognitive processes. In a reaction time study, 20 children with mild mental retardation were required to determine if simultaneously presented photographs of pairs of faces were pictures of the same person or of different people (identity matching), or to determine if the pairs of faces showed the same expressions or different expressions (expression matching). Faces of familiar and unfamiliar people were used as stimuli. For identity matching, reaction times were faster for familiar faces than for unfamiliar faces. For expression matching, there was no difference between familiar and unfamiliar faces. These results are consistent with neuropsychological findings from the general population indicating that analyses of facial expressions proceed independently from processes involved in establishing a person's identity. Our results suggest that the basic neuropsychological mechanisms that underlie cognitive processing of facial identity and facial expressions in children with mental retardation may be similar to those of people in the general population.

Behavior treatment programs, readability, and treatment outcomes.

Reading grade level and readability are rarely considered as important variables in the implementation and outcome of behavior treatment plans. In the first of two studies, we analyzed the reading level and readability of 20 behavior treatment plans developed by certified behavior analysts. We found that the behavior plans were written at college reading level-well above the reading level of the average frontline staff member. On a test of readability, none of the behavior plans met criterion on all 12 critical readability variables. To test if there was a correlation suggestive of a relationship among reading grade level, readability, and treatment outcomes, we divided the behavior treatment plans into two groups; 10 that had relatively high readability levels and 10 that had relatively low readability levels. A comparison of the two groups indicated that the average reading level of the behavior plans in both groups was about the same, and the higher readability had somewhat better treatment outcomes. In the second study, we used a multiple baseline design across four individuals to directly assess the effects of manipulating reading grade level and readability of behavior treatment plans on treatment outcomes. Results showed that these manipulations greatly enhanced treatment outcomes of all four individuals. Our data suggest that reading grade level and readability of behavior treatment plans are important variables that directly affect treatment outcomes.