Considering efficacy and effectiveness trials of cognitive behavioral therapy among youth with autism: A systematic review

Abstract

Cognitive behavioral therapy is a widely studied and commonly used psychosocial intervention for treating emotional problems in individuals with autism. To date, most studies of cognitive behavioral therapy and autism have focused on efficacy. Effectiveness trials, by contrast, measure whether an intervention produces particular results under “real-world” clinical conditions. We conducted a systematic review of cognitive behavioral therapy interventions targeting affective disorders among youth with autism and (a) classified studies as either efficacy or effectiveness trials and (b) coded how the effectiveness trials reflect the implementation characteristics outlined in the Framework of Dissemination in Health Services Intervention Research. The systematic search yielded 2959 articles, with 33 studies meeting inclusion criteria. Thirteen studies were categorized as effectiveness and 20 as efficacy. We discuss how the effectiveness studies considered elements of the implementation framework and provide recommendations for future studies, including greater consideration and measurement of adoption and sustainability processes, as well as organizational- and system-level outcomes. Results shed light on our understanding of the effectiveness of cognitive behavioral therapy in routine clinical practice, how an implementation framework can be used to guide and improve effectiveness studies, and identify barriers, facilitators, and gaps in the implementation process. Lay abstract Cognitive behavioral therapy is a common treatment for emotional problems in people with autism. Most studies of cognitive behavioral therapy and autism have focused on efficacy, meaning whether a treatment produces results under “ideal” conditions, like a lab or research setting. Effectiveness trials, by contrast, investigate whether a treatment produces results under “real-world” conditions, like a community setting (e.g. hospital, community mental health center, school). There can be challenges in bringing a cognitive behavioral therapy treatment out of a lab or research setting into the community, and the field of implementation science uses frameworks to help guide researchers in this process. In this study, we reviewed efficacy and effectiveness studies of cognitive behavioral therapy treatments for emotional problems (e.g. anxiety, depression) in children and youth with autism. Our search found 2959 articles, with 33 studies meeting our criteria. In total, 13 studies were labelled as effectiveness and 20 as efficacy. We discuss how the effectiveness studies used characteristics of an implementation science framework, such as studying how individuals learn about the treatment, accept or reject it, how it is used in the community over time, and any changes that happened to the individual or the organization (e.g. hospital, school, community mental health center) because of it. Results help us better understand the use of cognitive behavioral therapy in the community, including how a framework can be used to improve effectiveness studies.

Correction to: A Systematic Review of Mental Health Interventions for ASD: Characterizing Interventions, Intervention Adaptations, and Implementation Outcomes

“…Consistent with prior reviews examining mental health interventions for ASD (e.g. Keefer et al, 2018;Lake et al, 2020), the primary mental health problems or conditions targeted were internalizing problems (primarily anxiety) and challenging behaviors. Interventions developed specifically for ASD more frequently targeted externalizing or transdiagnostic problems, such as challenging behaviors, compared to those adapted for ASD, where anxiety was more frequently targeted.…”

“…Many interventions reviewed reported adapting existing mental health EBIs for use with ASD. CBT, CBT-based, and behavioral parent training interventions were the most frequently adapted EBIs, which is similarly reflected by these approaches' large representation within the broader children's mental health services literature, including those specifically pertaining to ASD (Keefer et al, 2018;Lake et al, 2020). ASD-specific adaptations were more common than general adaptations, with the most common goal or intent of adaptations to tailor for ASD characteristics.…”

“…Acceptability, appropriateness, and feasibility were also frequently examined, with only limited examination of implementation cost and sustainability. None of the studies considered adoption, or penetration, consistent with a recent review of CBT trials for youth with ASD (Lake et al, 2020). While the range of outcomes examined is promising, enhanced attention to and consideration of the range of implementation outcomes is warranted, especially for supporting the translation of these interventions to routine care.…”

“…There is minimal research characterizing implementation strategies and outcomes within studies testing adapted mental health EBIs for ASD. The exception is recent work by Lake et al (2020) that conducted a focal examination of implementation strategies and outcomes within the context of effectiveness trials for CBT for ASD. Further efforts examining these key implementation factors across the range of mental health interventions tested for youth with ASD is valuable to informing and responding to increasing prioritization of translating these interventions into routine care settings.…”

Parental Quality of Life and Involvement in Intervention for Children or Adolescents with Autism Spectrum Disorders: A Systematic Review

“…In line with a previous systematic review [ 24 ], our results showed that access to ASD services is a relevant protective factor not only for children, but also for parents [ 40 ]. Children with ASD can be expected to gain significant improvements when diagnosed early and when engaged in structured, intensive, evidence-based programs [ 61 , 62 , 63 ]. In contrast, difficulties in meeting the service needs of children with ASDs, ranging from general medical services to supportive services [ 64 ], can generate a vicious cycle of worsening symptoms and an overload of responsibility on parents who come to feel exhausted and ineffective [ 39 ].…”