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A Cross-Regional and Multidisciplinary Delphi Consensus Study Describing Usual Care for Anxiety Problems in School to Transition-Age Youth with Autism
Strides have been made in recent years to develop evidence-based practices (EBPs) for core social and highly prevalent comorbid conditions, such as anxiety disorders, in youth with ASD. A critical step to successfully implementing such EBPs is to develop a greater understanding of what comprises usual care for youth with ASD in community settings. Yet, even developing an understanding of the landscape of usual care services is complicated by the lack of a common, inclusive vocabulary and catalog of intervention strategies with which to survey the diverse range of professional disciplines that serve youth with ASD.
Objectives:
This study aimed to develop consensus among experts from multiple disciplines and regions in the U.S. regarding the intervention strategies most familiar to providers serving youth (7-22 years) with ASD, and those considered most useful, commonly-used, and research-supported to address anxiety in this population.
Methods:
Using an online Delphi technique (Hsu, 2007; Bishop et al., 2016), snowball sampling was used to recruit a panel of 66 expert ASD providers (i.e., primarily served youth with ASD for >5 years and served >50 ASD individuals) representing multiple disciplines (education, psychology, psychiatry, behavior analysis, social work) from 5 sites (Philadelphia, Chicago, New York City, San Diego, Long Island). Round 1 began with a set of 50 intervention strategies (with descriptive examples) derived from a systematic review of the literature. Participants rated their familiarity with each strategy on a 4-point scale (“not at all” to “very”), added free text comments and suggested additional strategies not represented in the list. Familiar strategies were also rated on the same 4-point scale for: frequency of use, usefulness, and empirical support for reducing anxiety in ASD (ratings for other presenting problems were also collected but our analyses will focus on anxiety). Round 1 responses were synthesized by the research team, who then removed, combined, modified and added items to facilitate consensus. The revised list of strategies was returned to the panel for a second evaluation. Eighty percent of the initial sample completed the revised survey.
Results:
Composite results yielded a list of 56 intervention strategies, 48 of which were familiar/very familiar to >75% of the sample. Of these common strategies, consensus was also established around those most often used (16 strategies >75%), most useful (33 strategies at >75%), and most research supported (8 strategies > 75%) to treat anxiety in ASD. In general, agreement regarding the usefulness of a strategy did not always correspond to beliefs about how often that strategy was used or research supported (Table 1).
Conclusions:
Delphi methodology was used to achieve consensus among expert ASD providers from multiple disciplines and locales regarding the intervention strategies used to support youth with ASD and co-occurring anxiety. Consensus ratings also suggest variability in the perceived usefulness, use and research support for these strategies as treatments for anxiety by expert providers. These findings may support a “two-way” bridge of communication, wherein knowledge from both providers and from clinical research is integrated to identify and disseminate effective interventions.