Use of a Best Practice Alert (BPA) to Increase Diversity Within a US-Based Autism Research Cohort.

We evaluated the success of a best practice alert (BPA) in recruiting underrepresented families into an autism spectrum disorder research cohort by comparing BPA-response outcomes (Interested, Declined, Enrolled, Dismissed) in pediatric primary care practices (TCPs) serving diverse communities with those of subspecialty clinics. Compared to subspecialty clinics, TCPs had higher proportions of Interested responses for patients with private insurance (60.9% vs. 46.2%), Dismissed responses for patients with public insurance (30.1% vs. 20.0%), and Interested responses for non-white patients (47.7% vs. 33.3%). A targeted BPA can help researchers access more diverse groups and improve equitable representation. However, select groups more often had their alert dismissed, suggesting possible selection bias among some pediatricians regarding who should receive information about study opportunities.

Utilization of a Best Practice Alert (BPA) at Point-of-Care for Recruitment into a US-Based Autism Research Study.

Provider referral is one of the most influential factors in research recruitment. To ease referral burden on providers, we adapted the Best Practice Alert (BPA) in the EPIC Electronic Health Record and assessed its utility in recruiting pediatric patients with autism spectrum disorder for the national SPARK study. During a year-long surveillance, 1203 (64.0%) patients were Interested in SPARK and 223 enrolled. Another 754 participants not recruited via the BPA also enrolled; 35.5% of these participants completed their participation compared to 58.3% of BPA-referred participants. Results suggest that (a) a BPA can successfully engage providers in the study-referral process and (b) families who learn about research through their providers may be more engaged and effectively retained.

Anxiety in Angelman Syndrome.

Angelman Syndrome (AS) is a neurodevelopmental disorder most commonly caused by the impaired expression of the maternal UBE3A gene on chromosome 15. Though anxiety has been identified as a frequently present characteristic in AS, there are limited studies examining anxiety in this population. Studies of anxiety in other neurodevelopmental disorders have found disorder specific symptoms of anxiety and age specific displays of anxiety symptoms. However, there is a consistent challenge in identifying anxiety in people with neurodevelopmental disorders given the lack of measurement instruments specifically designed for this population. Given the limited information about AS and anxiety, the aims of the current project were to (a) examine symptoms of anxiety in children with AS and (b) determine the correlates of anxiety in children with AS. Participants included 42 adult caregivers of youth with AS in the AS Natural History study who completed the Developmental Behavior Checklist (DBC). The results found that 26% of the sample demonstrated elevated symptoms of anxiety and established a relationship between elevated anxiety in youth with AS and higher levels of irritability, hyperactivity, self-absorbed behaviors, and disruptive/antisocial behaviors. Findings from this research provide a foundation for tailoring evidence-based assessments and treatments for youth with AS and anxiety.

Obsessive-Compulsive Disorder Misdiagnosis among Mental Healthcare Providers in Latin America.

Mental healthcare professionals often have limited awareness of different obsessive-compulsive disorder (OCD) symptom presentations, which may contribute to years between OCD symptom onset and treatment initiation. While research has identified high rates of OCD misdiagnosis among clinicians from the United States and Canada, research on OCD symptom awareness among healthcare providers in Latin American (LATAM) regions is limited. In this study, LATAM mental healthcare providers (N = 83) provided diagnostic impressions based on five OCD vignettes: three with symptoms centered on taboo thoughts (sexual, harming others, and religion/scrupulosity) and two about contamination or symmetry obsessions. Rates of incorrect (non-OCD) diagnoses were significantly higher for the taboo thoughts vignettes (sexual, 52.7%; harm/aggression, 42.0%; and religious, 34.7%) vs. contamination obsessions (11.0%) and symmetry obsessions (6.9%). The OCD vignette depicting sexual obsessions was often attributed to a paraphilic disorder (36.5%). Bachelor's level clinicians had significantly lower odds of accurately identifying all three vignettes related to taboo thoughts compared to respondents with a graduate degree. Accurate identification of the three taboo vignettes was also associated with first-line psychological treatment recommendations (i.e., cognitive-behavioral therapy) even when controlling for respondents' theoretical orientation. Exposure was rarely mentioned when clinicians were prompted to provide treatment recommendations for each vignette (8-9% of the time for symmetry and contamination vignettes, 5-7% for taboo though vignettes). Like clinicians in the United States and Canada, mental health professionals in LATAM may misidentify OCD symptom presentations, particularly sexual obsessions, highlighting a need for education and training.

Parent-led, stepped-care cognitive-behavioral therapy for youth with autism and co-occurring anxiety: study rationale and method

Anxiety disorders affect up to 50% of individuals with autism spectrum disorder (ASD) and are significantly impairing to the person affected, as well as to their loved ones. Cognitive-behavioral therapy (CBT) has been established as the gold-standard treatment for anxiety disorders among typically developing youth and adults, and demonstrates similar efficacy among youth with high-functioning autism (HFA). Many CBT interventions utilize a "full-package" treatment approach to treat co-occurring anxiety in youth with ASD. However, these service delivery systems are often therapist-intensive, costly, and impractical, thereby compromising full engagement and treatment adherence. This paper describes the design, rationale, and methodology of a study examining stepped-care CBT for youth with HFA and co-occurring anxiety - a clinical trial examining the efficacy of low-intensity, parent-led CBT as the first line of treatment and utilizing a more intensive, therapist-led intervention for nonresponders. The study will evaluate the potential benefits of stepped-care and parent-led therapist-assisted interventions, predictors of treatment response, and the economic value of using a stepped-care model. Implications for practice will be discussed.

Parent-led, stepped-care cognitive-behavioral therapy for youth with autism and co-occurring anxiety: study rationale and method.

Anxiety disorders affect up to 50% of individuals with autism spectrum disorder (ASD) and are significantly impairing to the person affected, as well as to their loved ones. Cognitive-behavioral therapy (CBT) has been established as the gold-standard treatment for anxiety disorders among typically developing youth and adults, and demonstrates similar efficacy among youth with high-functioning autism (HFA). Many CBT interventions utilize a "full-package" treatment approach to treat co-occurring anxiety in youth with ASD. However, these service delivery systems are often therapist-intensive, costly, and impractical, thereby compromising full engagement and treatment adherence. This paper describes the design, rationale, and methodology of a study examining stepped-care CBT for youth with HFA and co-occurring anxiety - a clinical trial examining the efficacy of low-intensity, parent-led CBT as the first line of treatment and utilizing a more intensive, therapist-led intervention for nonresponders. The study will evaluate the potential benefits of stepped-care and parent-led therapist-assisted interventions, predictors of treatment response, and the economic value of using a stepped-care model. Implications for practice will be discussed.