Dimensional Assessment of Restricted and Repetitive Behaviors: Development and Preliminary Validation of a New Measure.

OBJECTIVE: This study aimed to provide initial validation of the Dimensional Assessment of Restricted and Repetitive Behaviors (DARB), a new parent-report measure designed to capture the full range of key restricted and repetitive behaviors (RRB) subdomains. METHOD: Parents of 1,892 children and adolescents with autism spectrum disorder (mean [SD] age = 10.81 [4.14] years) recruited from the SPARK (Simons Foundation Powering Autism Research for Knowledge) research match completed the DARB, several existing RRB instruments, and measures of social and communication impairments and anxiety. A subsample of 450 parents completed the DARB after 2 weeks to evaluate the test-retest stability. RESULTS: Exploratory graph analysis conducted in the exploratory subsample identified 8 dimensions that were aligned with hypothesized RRB subdomains: repetitive sensory motor behaviors, insistence on sameness, restricted interests, unusual interests, sensory sensitivity, self-injurious behaviors, obsessions and compulsive behaviors, and repetitive language. The confirmatory application of the exploratory structural equation modeling conducted in the confirmatory subsample showed that the derived factor structure had a good fit to the data. Derived factors had excellent reliability, convergent and divergent validity, and very strong test-retest stability and showed a distinct pattern of associations with key demographic, cognitive and clinical correlates. CONCLUSION: The DARB will be useful in a variety of research and clinical contexts considering the prominence and clinical impact of RRB in autism spectrum disorder. Strong preliminary evidence indicates that the new scale is comprehensive and captures a wide range of distinct RRB subdomains not simultaneously captured by any of the existing instruments.

Psychometric Properties of a Self-Report Instrument for the Assessment of Tic Severity in Adults With Tic Disorders.

The gold-standard measure of tic severity in tic disorders (TD), the Yale Global Tic Severity Scale (YGTSS), is a semistructured clinician-administered interview that can be time consuming and requires highly trained interviewers. Moreover, the YGTSS does not provide information regarding frequency and intensity of specific tics because all motor and all vocal tics are rated as a group. The aim of the present study is to describe and test the Adult Tic Questionnaire (ATQ), a measure for the assessment of tic severity in adults, and to report its preliminary psychometric properties. The ATQ is a brief self-report questionnaire that provides information regarding frequency, intensity, and severity of 27 specific tics. In addition, the ATQ produces total frequency, intensity, and severity scores for vocal and motor tics, as well as a global total tic severity score. Results showed that the ATQ demonstrated very good internal consistency and temporal stability. The total, vocal, and motor tic severity scales of the ATQ showed strong correlation with corresponding subscales of the YGTSS, indicating strong convergent validity. Weak correlations with measures of severity of obsessive-compulsive disorder and attention deficit/hyperactivity disorder, indicated strong discriminant validity. The ATQ, a promising measure for the assessment of tic severity in adults with TD, may be a valuable supplement to the current recommended assessment battery for TD. Furthermore, the ATQ enables clinicians and researchers to track changes in the frequency and intensity of specific tics, which is important given their complex and dynamic nature.

Toward innovative, cost-effective, and systemic solutions to improve outcomes and well-being of military families affected by autism spectrum disorder.

The burdens faced by military families who have a child with autism are unique. The usual challenges of securing diagnostic, treatment, and educational services are compounded by life circumstances that include the anxieties of war, frequent relocation and separation, and a demand structure that emphasizes mission readiness and service. Recently established military autism-specific health care benefits set the stage for community-viable and cost-effective solutions that can achieve better outcomes for children and greater well-being for families. Here we argue for implementation of evidence-based solutions focused on reducing age of diagnosis and improving access to early intervention, as well as establishment of a tiered menu of services, individualized to the child and family, that fit with the military ethos and system of health care. Absence of this new model of care could compromise the utility and sustainability of the autism-specific benefit.

Health care needs of children with Tourette syndrome.

To document the impact of Tourette syndrome on the health care needs of children and access to health care among youth with Tourette syndrome, parent-reported data from the 2007-2008 National Survey of Children's Health were analyzed. Children with Tourette syndrome had more co-occurring mental disorders than children with asthma or children without Tourette syndrome or asthma and had health care needs that were equal to or greater than children with asthma (no Tourette syndrome) or children with neither asthma nor Tourette syndrome. Health care needs were greatest among children with Tourette syndrome and co-occurring mental disorders, and these children were least likely to receive effective care coordination. Addressing co-occurring conditions may improve the health and well-being of children with Tourette syndrome. Strategies such as integration of behavioral health and primary care may be needed to improve care coordination.

A phenomenological investigation of women with Tourette or other chronic tic disorders.

There are little data concerning clinical characteristics of women with Tourette disorder and chronic tic disorders in the extant literature and what is available mostly focuses on treatment-seeking individuals. The present research was conducted to provide a phenomenological characterization of tic disorders among 185 adult women with tic disorders. In addition to providing a descriptive overview of specific tic symptoms, tic severity, self-reported history of other psychiatric conditions, and impairment/lifestyle impact due to tics, this study compares 185 women and 275 men between 18 and 79 years old with tic disorders (who completed an identical battery of measures) based on demographic, social/economic status indicators, psychiatric variables (comorbidity, family psychiatric history, symptom presentation), adaptive functioning/quality of life, and impairment variables among a nonclinical adult sample. Finally, this research examines the relationship between tic severity and impairment indicators among women with tics. Sixty-eight percent of women in our sample reported severe motor tics and 40% reported severe phonic tics. Our exploratory data suggest that a sizeable number of adult women with persistent tics are suffering from psychiatric comorbidity and psychosocial consequences such as underachievement and social distress. Tic severity in women may be associated with lifestyle interference as well as with symptoms of depression and anxiety, and such symptoms may be more common among women with tics than in men with tics.

Patterns and correlates of tic disorder diagnoses in privately and publicly insured youth.

OBJECTIVE: This study examined the prevalence and demographic and clinical correlates of children diagnosed with Tourette disorder, chronic motor or vocal tic disorder, and other tic disorders in public and private insurance plans over the course of a 1-year period. METHOD: Claims were reviewed of Medicaid (n = 10,247,827) and privately (n = 16,128,828) insured youth (4-18 years old) focusing on tic disorder diagnoses during a 1-year period. Rates are presented for children with each tic disorder diagnosis overall and stratified by demographic characteristics and co-identified mental disorders. Mental health service use, including medications prescribed, and co-existing psychiatric disorders were also examined. RESULTS: In Medicaid-insured children, rates of diagnosis per 1,000 were 0.53 (95% confidence interval [CI] 0.51-0.55) for Tourette disorder, 0.08 (95% CI 0.07-0.08) for chronic motor or vocal tic disorder, and 0.43 (95% CI 0.41-0.44) for other tic disorders. In privately insured children, comparable rates were 0.50 (95% CI 0.49-0.52), 0.10 (95% CI 0.10-0.11), and 0.59 (95% CI 0.58-0.61). In 1 year, children diagnosed with tic disorders also frequently received other psychiatric disorder diagnoses. Compared with privately insured youth, children under Medicaid diagnosed with Tourette disorder had higher rates of attention-deficit/hyperactivity disorder (50.2% versus 25.9%), other disruptive behavior (20.6% versus 5.6%), and depression (14.6% versus 9.8%) diagnoses and higher rates of antipsychotic medication use (53.6% versus 33.2%). CONCLUSIONS: Despite similarities in annual rates of tic disorder diagnoses in publicly and privately insured children, important differences exist in patient characteristics and service use of publicly and privately insured youth who are diagnosed with tic disorders.

Exploring the impact of chronic tic disorders on youth: results from the Tourette Syndrome Impact Survey.

Prior research has demonstrated that chronic tic disorders (CTD) are associated with functional impairment across several domains. However, methodological limitations, such as data acquired by parental report, datasets aggregated across child and adult samples, and small treatment-seeking samples, curtail interpretation. The current study explored the functional impact of tics among youth in a large, "virtual" community sample. An Internet-based survey was completed by families with children who had CTD. The sample included 740 parents and 232 of their children (ages 10-17 years). The survey assessed impact across five functional domains: physical, social, familial, academic, and psychological. Health-related quality of life and perceptions of discrimination resulting from tics were also assessed. Results suggest that (1) youth with CTD experience mild to moderate functional impairment, (2) impairment is generally positively correlated with tic severity, (3) children with CTD plus one or more co-occurring psychiatric conditions tend to have greater functional impairment, and (4) a notable portion of youth with CTD experience discrimination due to tics. Implications and limitations of these findings are discussed.

Developmental disabilities modification of the Children's Global Assessment Scale.

BACKGROUND: Interventions for pervasive developmental disorders (PDD) aim to alleviate symptoms and improve functioning. To measure global functioning in treatment studies, the Children's Global Assessment Scale was modified and psychometric properties of the revised version (DD-CGAS) were assessed in children with PDD. METHODS: Developmental disabilities-relevant descriptors were developed for the DD-CGAS, and administration procedures were established to enhance rater consistency. Ratings of clinical case vignettes were used to assess inter-rater reliability and temporal stability. Validity was assessed by correlating the DD-CGAS with measures of functioning and symptoms in 83 youngsters with PDD. Sensitivity to change was assessed by comparing change from baseline to post-treatment with change on the Aberrant Behavior Checklist-Irritability and Clinical Global Impressions-Improvement subscale scores in a subset of 14 children. RESULTS: Inter-rater reliability (intraclass correlation coefficient [ICC] = .79) and temporal stability (average ICC = .86) were excellent. The DD-CGAS scores correlated with measures of functioning and symptoms with moderate to large effect sizes. Changes on the DD-CGAS correlated with changes on the Aberrant Behavior Checklist-I (r = -.71) and Global Impressions Scale-I (r = -.52). The pre-post DD-CGAS change had an effect size of .72. CONCLUSIONS: The DD-CGAS is a reliable instrument with apparent convergent validity for measuring global functioning of children with PDD in treatment studies.

Contemporary assessment and pharmacotherapy of Tourette syndrome.

To develop a guide to clinical assessment and pharmacotherapy for children and adults with Tourette syndrome (TS), we reviewed published literature over the past 25 years to identify original articles and reviews on the assessment and pharmacological treatment of Tourette syndrome, attention-deficit/hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD). The literature search also included a survey of reviews published in book chapters. The assessment section was compiled from several reviews. Pharmacological treatments were classified into those with strong empirical support (as evidenced by two positive placebo-controlled studies for tics, OCD, or ADHD in TS samples); modest empirical support (one positive placebo-controlled study), or minimal support (open-label data only). We conclude that accurate diagnosis, including identification of comorbid conditions, is an essential step toward appropriate treatment for patients with TS. In many patients with TS, symptom management requires pharmacotherapy for tics or coexisting conditions. The evidence supporting efficacy and safety for medications used in patients with TS varies. But this evidence offers the best guide to clinical practice.

Assessment of the integrity of study blindness in a pediatric clinical trial of risperidone.

OBJECTIVE: Controlled clinical trials in pediatric psychopharmacology rely on blinded parents and clinical evaluators for outcome data, but little is known about the success of the masking procedures. The blindness of clinical evaluators and parents was examined in a clinical trial of risperidone in autism. METHODS: Clinical evaluators and parents were asked to guess individual treatment assignments at the end of an 8-week placebo-controlled trial of risperidone in children (aged 5-17 years) with autism. Clinical evaluators did not have access to adverse event data. RESULTS: The rates of correctly guessing individual treatment assignment (risperidone or placebo) were significantly greater than chance for both clinical evaluators and parents (P < 0.001). Clinical evaluators associated improvement with attribution to risperidone, and lack of improvement with attribution to placebo, in both the risperidone and placebo treatment arms. Parents associated improvement with attribution to risperidone only in the placebo treatment arm. Parents reported that adverse events influenced their guesses, but presence of adverse events was not associated with correctness of guess. CONCLUSION: Improvement was associated with attribution to active treatment regardless of actual treatment assignment, and adverse events did not appear to be a threat to study blindness.

Challenges in evaluating psychosocial interventions for Autistic Spectrum Disorders.

In 2002, the National Institutes of Health sponsored a meeting concerning methodological challenges of research in psychosocial interventions in Autism Spectrum Disorders. This paper provides a summary of the presentations and the discussions that occurred during this meeting. Recommendations to federal and private agencies included the need for randomized clinical trials of comprehensive interventions for autism as the highest, but not the sole priority. Ongoing working groups were proposed to address psychosocial interventions with a focus on relevant statistics, standardized documentation and methods of diagnosis, development of outcome measures, establishment of standards in research; and the need for innovative treatment designs, including application of designs from other research areas to the study of interventions in ASD.

Comparison of increasingly detailed elicitation methods for the assessment of adverse events in pediatric psychopharmacology.

OBJECTIVE: To improve the gathering of adverse events (AEs) in pediatric psychopharmacology by examining the value and acceptability of increasingly detailed elicitation methods. METHOD: Trained clinicians administered the Safety Monitoring Uniform Report Form (SMURF) to 59 parents and outpatients (mean age +/- SD = 11.9 +/- 3.2 years) in treatment, with 36% on stimulants, 29% on selective serotonin reuptake inhibitor drugs, 10% on both, and 25% on other drug combinations. The SMURF included a brief general inquiry, a drug-specific inquiry, and a comprehensive body system review (BSR). RESULTS: SMURF administration took 24.6 +/- 13.9 minutes (median, 21). The BSR took 15.5 +/- 8.1 minutes (median, 14) longer (p < .0001) than the general inquiry (4.3 +/- 5.4 minutes) and the drug-specific inquiry (4.2 +/- 2.9 minutes). The general inquiry elicited 48 AEs, the drug-specific inquiry elicited 16 additional AEs, and the BSR 129 additional AEs. Of all the clinically relevant AEs elicited by the SMURF (n = 36), 19 (53%) were elicited by the BSR. The BSR length and detail were acceptable to parents but not to clinicians. CONCLUSIONS: The BSR elicited additional clinically significant AEs that had been missed with less detailed methods. Parents, but not clinicians, rated satisfaction and acceptability of the BSR as good.

Review of safety assessment methods used in pediatric psychopharmacology.

OBJECTIVE: Elicitation is an essential and critical step in ascertaining adverse events (AEs). This report reviews elicitation methods used in published clinical trials of psychopharmacological agents in children. METHOD: Pediatric psychopharmacology reports were reviewed for safety methods in the Medline database. Studies were included if they were published 1980 or later, provided data on AEs, and described the ascertainment methodology used for determining them. RESULTS: A review of 196 pediatric psychopharmacology articles depicting safety assessments in clinical studies over the past 22 years revealed that there was no common method used for eliciting or reporting AE data. CONCLUSION: The current inconsistency in safety data ascertainment is a major limitation that likely impairs the ability to promptly and accurately identify drug-induced AEs. Research on how best to standardize safety methods should be considered a priority in pediatric psychopharmacology.

How can we improve the assessment of safety in child and adolescent psychopharmacology?

OBJECTIVE: To identify approaches to improving methods for assessing tolerability and safety of psychotropic medications in children and adolescents. METHOD: Strengths and limitations of current methodology were reviewed and possible alternatives examined. RESULTS: Research on the validity of safety evaluation has been extremely limited. No evidence-based "gold standard" exists. Clinical trials remain the best design to establish causality, but sample size limitations prevent the detection of infrequent, though serious, adverse events. Other designs, such as cohort and case-control studies, and approaches, such as mining of large databases, must be considered. CONCLUSION: The current lack of methodological standardization across studies prevents generalizations and meta-analyses. Because the issues relevant to drug safety are diverse, a variety of methodological approaches and instruments are needed. It is, however, possible to adopt standard basic definitions of adverse events, degree of severity, ascertainment methods, and recording procedures, as a common "core," to which more specific assessment instruments can be added. Systematic empirical testing and validation of safety methodology is needed.

Multiple psychotropic pharmacotherapy among child and adolescent enrollees in Connecticut Medicaid managed care.

OBJECTIVES: The authors sought to determine the prevalence, patterns, and demographic correlates of multiple psychotropic pharmacotherapy in a statewide sample of low-income children and adolescents in community-based clinical care. METHODS: The Medicaid managed care database of the Connecticut Department of Social Services was the source of linked encounter and pharmacy information for the one-year period ending June 30, 1999. Period prevalence was calculated for children and adolescents ranging in age from newborn through 18 years who had any psychotropic drug prescription claims during the study period. For each participant, multiple psychotropic pharmacotherapy was defined as having claims for prescriptions for medications in two or more different psychotropic drug classes during a seven-day period. Age, gender, race, and state custody status were examined across groups, and multiple psychotropic pharmacotherapy patterns were identified. RESULTS: Of the 196,505 youths in Medicaid managed care, 9,447 received at least one psychotropic medication, yielding a period prevalence of 4.8 percent. Among youths who received psychotropics, 13.6 percent had received multiple psychotropic pharmacotherapy. Multivariate logistic regression revealed that participants who received psychotropics, alone or in combination, were significantly more likely to be in state custody, male, and older than other participants and less likely to be African American or Hispanic. Stimulants, antidepressants, and mood stabilizers were the most commonly dispensed agents. The most common drug class combinations were an antidepressant plus an antipsychotic, a stimulant plus an antidepressant, and a stimulant plus an alpha(2) agonist. CONCLUSIONS: Our findings revealed sociodemographic differences in psychopharmacological care among young Medicaid managed care enrollees and the common occurrence of multiple psychotropic pharmacotherapy.

Assessment of symptom exacerbations in a longitudinal study of children with Tourette's syndrome or obsessive-compulsive disorder.

OBJECTIVES: The severity of tic and obsessive-compulsive (OC) symptoms varies over time. Consequently, how do we, as clinicians, know when a change in symptom severity occurs that falls outside of the normal range of fluctuation? The goal of this study was to describe the level of symptom severity fluctuation over time and to establish an objective, prospective, and quantitative method for identifying symptom exacerbations in children with Tourette's syndrome, obsessive-compulsive disorder (OCD), or both. A second major aim was to assess whether fluctuations in tic and OC symptom severity covaried with one another. METHOD: Monthly consecutive Yale Global Tic Severity Scale and Children's Yale-Brown Obsessive Compulsive Scale scores were prospectively obtained in 64 children diagnosed with Tourette's syndrome and/or OCD for periods ranging from 3 to 39 months. Exacerbation thresholds were estimated by using state-of-the-art bootstrap methods. These thresholds were then independently evaluated by asking two expert clinicians to identify, retrospectively, clinically significant exacerbations based on a review of all available clinical and research records. RESULTS: The severity of tic and OC symptoms displayed a high degree of intrasubject variability. Exacerbation thresholds, which incorporated the change score from the previous month and the current symptom score, provided the best agreement with those of expert clinicians. When both tic and OC symptoms were present, they showed a significant degree of covariation. CONCLUSIONS: Evidence-based treatments are coming of age. The use of valid, clinician-rated severity scales will likely become a standard part of clinical practice. Bootstrapping methods may provide a quantitative and convenient way to obtain clinically valid thresholds to assess tic and OC symptom exacerbations. This method has the potential to be applied to other symptom domains where exacerbation thresholds are needed.