Keywords

Autism spectrum disorder; evidence-based intervention; ACT SMART Implementation Toolkit; cognitive behavioral therapy; implementation; dissemination

Gaps Between Research and Routine Care for Anxiety in Youth With Autism

Anxiety is a common co-occurring condition in autism spectrum disorder (ASD), that contributes to the complexity of youth’s clinical presentation, functioning, and service needs (Joshi et al., 2010). Although there is a rapidly growing body of evidence for the efficacy of cognitive behavioral therapy for anxiety in youth with ASD (Wood et al., 2015a), there is also a well-documented gap between research-based interventions and routine care. Evidence-based interventions (EBIs) for ASD have traditionally been difficult to transport from university laboratory settings to community settings (Garland et al., 2013; Dingfelder & Mandell, 2011), and recent small-scale studies have found that EBIs are not consistently implemented in routine, community settings (Brookman-Frazee et al., 2010). Contributing to this research-to-practice gap, youth with ASD and anxiety are often provided services simultaneously from multiple community service systems targeting core and associated symptoms of ASD (Brookman-Frazee et al., 2009; Goin-Kochel et al., 2007). For example, providers from multiple disciplines deliver services to youth with ASD including psychologists, behavioral therapists, educators, pediatricians, nurses, speech-language pathologists, occupational therapists, physical therapists, audiologists, neurologists, and social workers (McLennan et al., 2008), each with diverse and unique characteristics, such as education level and training and attitudes toward delivery of EBIs. In addition, each provider may use different terminology or identify different needs for intervention, bringing their own perspectives on community care for youth with ASD (Volkmar et al., 2011). For instance, mental health clinicians may have less specialized diagnostic or ASD intervention-specific training, which poses challenges to treating youth with ASD who have co-occurring psychiatric conditions, while community providers who specifically serve populations with ASD or developmental disabilities are not often trained in providing mental health services.

Additionally, the service systems in which these providers work vary in their policies, organizational structure, intervention utilization, and funding support. As a result, youth with ASD and co-occurring anxiety are often provided services from systems operating in a balkanized fashion that all too frequently yield fragmented care (Christon et al., 2015; Cidav et al., 2013; Swiezy et al., 2008). A recent study found that clinicians across disciplines reported using or recommending intervention elements based on Applied Behavioral Analysis (ABA) principles (e.g., reinforcement, visual supports and task analysis) most frequently for youth with ASD and co-occurring anxiety, with cognitive-behavior therapy (CBT) used or recommended the least (Christon et al., 2015). Even more surprising, clinicians reported providing and recommending play therapy significantly more than CBT for youth with ASD despite the efficacy literature supporting CBT with youth with ASD and co-occurring symptoms (see Scarpa et al., 2013 and Wood et al., 2011 for efficacy data for CBT).

While it is unclear if clinicians do not provide or recommend CBT due to lack of provider knowledge and training or due to a lack of readily available treatment models within the community, these findings demonstrate the gap between research and practice that has been a prominent discussion within mental health literature for over a decade (Warren et al., 2010), and highlight the ongoing challenges in translating research knowledge into clinical practice (Chambers et al., 2013; Garland et al., 2013). Fortunately, recent paradigm shifts in the field of psychology have pushed researchers to look beyond the question of efficacy—the extent to which interventions achieve outcomes under ideal circumstances—to translational science, which focuses on testing the effectiveness of interventions, the success of community clinicians who use them, and implementation of EBIs within community agencies and systems (Dingfelder & Mandell, 2011; Feldman, 2008; Wood et al., 2015b). Two specific time points are particularly pivotal for the translation of EBI into community settings: 1. during intervention development and 2. when facilitating implementation of existing EBIs within community care settings.

Developing Effective Anxiety Interventions for Youth With Autism

In an effort to accelerate the bidirectional translation between research and routine care delivery, care must be taken at the intervention development stage to ensure the fit between the intervention and community settings (Dingfelder & Mandell, 2011). In order to do so, we offer the following recommendations to intervention developers:

Implementing Existing Anxiety Interventions With Youth With Autism

Born out of the need to minimize the substantial delay (up to 17 years) in translating only 14% of research findings to practice to increase the public health impact of EBIs (Balas, 1998; Balas & Boren, 2000), dissemination and implementation (D&I) science (see Table 12.1) is an emerging field that provides theoretical and empirical infrastructure for the promotion of EBI transportation to community settings (Rabin & Brownson, 2012). Specifically, dissemination is defined as “the targeted distribution of information and intervention materials to a specific public health or clinical practice audience. The intent is to spread knowledge and the associated evidenced-based interventions” (National Institutes of Health Program Announcement, 2016). Implementation science “is the scientific study of methods to promote the systematic uptake of research findings and other evidence-based practices into routine practice, and thereby improve the quality and effectiveness of health services and care” (p.1; Eccles & Mittman, 2006). Recognizing the complex interplay of variables integral in transporting an EBI to community practice, dissemination and implementation (D&I) science necessitates consideration of multiple levels of influence including the youth and families accessing care, the clinicians delivering care, the agencies or organizations through which care is delivered, and healthcare policy that effects service delivery (Bauer et al., 2015).

Several comprehensive, phased, and multilevel implementation frameworks have been developed (e.g., Aarons et al., 2011; Damschroder et al., 2007; Greenhalgh et al., 2004) that denote specific “inner” (e.g., consumer, provider characteristics) and “outer” (e.g., policy, fiscal environment) context factors that may facilitate or hinder the adoption, implementation, and sustainment of EBIs in community care settings. An overarching goal of D&I frameworks is to maximize the “fit” between the EBI and the service context in which it is to be implemented. This is done through comprehensive study of routine care practices and service systems (Drahota et al., 2012), including characteristics specific to the healthcare policy and legislative landscape, service system (outer context), and the organization, providers, and individual with ASD (inner context). One promising method that is highlighted to facilitate “fit” between EBIs and organizational contexts is the inclusion of strong, well-defined community–academic partnerships with community stakeholders (e.g., caregivers, service providers, clinicians, clinical supervisors, agency leaders) (Garland & Brookman-Frazee, 2015; Drahota et al., 2016).

Comprehensive understanding and ongoing monitoring of the contextual landscape of a service system is essential to facilitate adoption, uptake, and sustained delivery of EBIs without compromised treatment adherence, and to facilitate the de-adoption of practices that are not evidence-based (Bauer et al., 2015). For example, Drahota and colleagues (2015) utilized a mixed methods design to evaluate hindering and facilitating factors to implementation of EBI in community settings for youth with ASD. Agency leaders reported that there is not an existing systematic implementation process that fits the ASD usual care setting resulting in a lack of structure and consistency in implementation efforts. Further, agency leaders reported uncertainty about which implementation strategies best facilitate EBI adoption, uptake, and sustained use.

Utilizing a theory-based implementation framework and an ASD-specific implementation toolkit that addresses the unique client, provider, and contextual factors of ASD community service systems is a promising method for building upon existing EBIs while also accelerating D&I efforts for this population. The following section describes a D&I framework and corresponding implementation toolkit—the ACT SMART Implementation Toolkit—used to improve the implementation of EBIs within ASD community agencies.

Adapted EPIS Model of Implementation

The EPIS (Exploration, Preparation, Implementation, Sustainment) model of implementation (Aarons et al., 2011) is a multi-phased, multi-level framework of implementation processes that was used to guide the development of the ACT SMART Implementation Toolkit. Recent discussions with ASD community stakeholders yielded an adapted EPIS conceptual model to better fit the needs of ASD community agencies (Drahota et al., 2012). Taken together, the five phases of the adapted EPIS (see Table 12.2) provide useful guidance for consideration of both inner and outer contextual factors that may influence the implementation of an EBI within a specific service setting and organizational context.

Outer Context. Outer contextual factors include sociopolitical context, policy, advocacy, funding, and inter-organizational networks. For example, recent healthcare legislation, namely the Patient Protection and Affordable Care Act (Patient Protection and Affordable Care Act, 2010), has a core goal of improving access to and quality of healthcare while lowering per capita costs. Moreover, mental health parity is highlighted within the Affordable Care Act and has significant potential to shape mental health service access, quality, and receipt for children with ASD. Policies such as these shape the outer context to facilitate greater mental health coverage for individuals, including youth with ASD, who also are experiencing co-occurring anxiety disorders. As a result, service systems have been pushed by policy to provide evidence-based interventions to intervene and ameliorate the symptoms of anxiety and related interference. A second example of important outer contextual factors for the ASD population includes parent networks. Parent networks have played an important role in advocating for greater intervention services to treat the challenging behaviors and anxiety disorders often comorbid with ASD. The strength of ASD advocacy networks can been seen by the increase in public and private funding through organizations such as Autism Speaks and the Interagency Autism Coordinating Committee, which offer guidance to the National Institutes of Health on funding and research priorities.

Inner Context. The inner context of the EPIS varies by phase, and commonly includes factors such as organizational-, leadership-, provider-, and client-level characteristics. For example, organizational culture—an organizational-level characteristic—has been defined as “the behavioral expectations that members of an organization are required to meet in their work environment” (Verbeke et al., 1998; Glisson et al., 2013), and is associated with receptivity of an organization to a new EBI. That is, if the organizational culture is receptive to identifying new EBI to benefit clinicians or clients, it is more likely that it will be implemented and sustained successfully, thereby increasing the quality of service delivery and positive patient outcomes (Aarons et al., 2012; Glisson & Green, 2006; Glisson & Hemmelgarn, 1998). The converse may be true as well; organizations with a culture of low receptivity to innovations are likely to experience greater barriers to adoption, uptake, and sustained use, despite the EBI meeting client needs or being advantageous for the agency. Additional inner contextual factors important for implementation include staffing and staff characteristics, EBI fit with agency values and needs, and EBI adaptability and training availability (Aarons et al., 2012).

While the adapted EPIS provides guidance for the implementation of EBIs within ASD community settings by emphasizing the need to consider both outer and inner contextual factors prior to and throughout the implementation process (Aarons et al., 2011), it does not offer concrete tools to support agency leader’s implementation of EBIs. As a result, the ACT SMART Implementation Toolkit was developed in collaboration with a community-academic partnership to provide a systematized approach for progressing through the multi-phased EPIS (Table 12.2).

The ACT SMART Implementation Toolkit

The Autism Community Toolkit: Systems to Measure and Adopt Research-Based Treatments (ACT SMART Implementation Toolkit) (Drahota et al., 2014a) is an evidence-informed, comprehensive, implementation toolkit designed to assist ASD agency leaders and clinicians to efficiently and effectively implement EBIs and de-implement unsupported strategies. It is comprised of a web-based implementation interface that has steps and activities to guide clinicians through the adapted EPIS phases and is accompanied by monthly facilitation meetings with ACT SMART facilitators who provide consultation about the process of implementation, de-implementation and sustainment. Facilitation is a consultation method that emphasizes change through encouragement and action promotion (Kitson et al., 1998; Kitson & Harvey, 2015), and has been found to help staff change work practices and behaviors successfully (Rycroft-Malone et al., 2002; Stetler et al., 2006) and improve the capacity of community-based agencies to plan, implement, and evaluate new EBIs in previous implementation studies (Hunter et al., 2009).

Phase 1: Exploration. The aims of the first phase of the ACT SMART Implementation Toolkit are to 1. identify practice and service delivery gaps within organizations by conducting a comprehensive organizational needs assessment to determine areas of strength and possible growth for the agency, 2. identify recommendations for next steps, and 3. assist with prioritizing agency goals. Factors important to consider when assessing an organization include client needs, effectiveness of interventions being delivered within the agency, perceived competency in the delivery of current interventions, staff attitudes toward innovations, staff training and attributes, agency resources, fidelity and performance measurements, organizational context, climate and culture, and previously used implementation and sustainment strategies. Using a structured and systematic method of conducting an organizational needs assessment allows for the most utility and ease. The ACT SMART Implementation Toolkit utilizes an assessment battery to achieve these goals. Numerous surveys are available for use and, fortunately with the continued development of implementation science as a discipline, measures and assessment tools are being placed in web-based repositories for use by researchers and clinicians (see the National Cancer Institute’s Grid-Enabled Measures Database and the Society for Implementation Research Collaboration—Instrument Review Project).

The ultimate goal of Phase 1 is to determine an agency’s receptivity to implementing a new EBI. This is an important consideration because if an agency is not receptive to implementing a new EBI, resources would be better spent improving the quality and organizational structure of the agency by recommending quality improvement literature and tools (c.f., Belson, 2014; Ovretveit, 2014). For agencies receptive to implementing new EBIs, an agency implementation team is formed and an ACT SMART facilitator is assigned to guide the implementation team through the continuation of the ACT SMART Implementation Toolkit.

Phase 2: Adoption Decision. The goals of Phase 2 is for the implementation team to identify an EBI that matches agency-identified needs and to make an informed decision about whether to adopt the EBI for use within the agency. Using the information identified in Phase 1, ACT SMART facilitators guide agency implementation teams through three steps: 1. identify an appropriate EBI to meet the needs derived from the organizational assessment; 2. evaluate EBI characteristics to determine whether it would be appropriate to meet client, clinician, and agency needs; and 3. synthesize this information to make a systematic decision whether or not to adopt the EBI. Specifically, during Step 1, the ACT SMART facilitator supports implementation team members’ efforts to explore the literature and available EBI repositories to identify an intervention that will match the need identified through the organizational assessment. For example, if the organizational assessment indicates that the agency's clients with ASD are experiencing anxiety and the clinicians are not effectively treating anxiety symptoms, implementation teams may wish to explore current literature and available manuals to meet this agency-level need. By reading the literature and obtaining anxiety CBT manuals, the implementation team will be able to evaluate important factors of the intervention before making a formal intervention adoption decision (Step 3).

Once an EBI has been identified and intervention resources have been obtained, implementation team members evaluate treatment and provider factors (Step 2) that have been found to influence the EBI adoption decision. Adoption decision factors include EBI fit and feasibility with the agency’s context and structure, the clinical value and research validity of the EBI, training requirements and availability, EBI funding sources, and the benefit of delivering a new EBI as compared with the cost. While these factors have been identified through interviews with agency leaders (Drahota et al., 2015), each factor may have variable influence over the final adoption decision for an implementation team. Thus, the ratings from each of these factors are synthesized and weighted by implementation teams to assist with making a systematic and informed adoption decision. Once an adoption decision is made, implementation teams either move onward to Phase 3 or return to evaluate a different EBI for possible adoption.

Phase 3: Preparation. The goals of the preparation phase are to 1. plan for EBI adaptation prior to staff training and implementation; 2. develop the staff training; and 3. select and plan for specific implementation strategy use. Especially with complex interventions developed in university settings, adaptations will be needed for the successful implementation of the EBI in community agencies. Literature suggests that clinicians often do not use EBIs due to disbelief in the research base, difficulty with implementation, requirement to change behaviors, manuals unable to meet complexity of usual care clinical population, and lack of infrastructure to support EBI implementation (Fixsen et al., 2005). Moreover, strict protocol adherence may be at odds with the implementation of EBIs in usual care settings (Aarons et al., 2012) by limiting the opportunity to tailor EBIs to client’s needs and culture and the community in which the service is being delivered (Nock et al., 2003; Lyon et al., 2014; Lau, 2006; Berwick, 2003). The purpose of EBI adaptation is to promote a better fit between the context in which the EBI was tested and the service setting where it will be implemented, as well as the target population of the EBI (Aarons et al., 2011; Lundgren et al., 2011; McHugh et al., 2009). However, caution should be taken to ensure that adaptations do not interfere with core elements of the EBI (Aarons et al., 2012). Therefore, it is important to classify the types of EBI adaptations needed and examine how these changes may potentially impact key outcomes in a broad set of circumstances and a variety of settings (Wiltsey-Stirman et al., 2012, 2013).

Specifically, implementation teams are asked to consider whether adaptations to the EBI will be necessary for its use within their agency and to consider whether adaptations are necessary to the content of the EBI and/or to the delivery context. Examples of adaptations to the content include, for example, tailoring or refining the intervention (e.g., changing terms or language, modifying worksheets), shortening session duration, frequency or number, or adjusting the order of the intervention modules, topics, or segments. Adaptations to the context may include changing the setting (e.g., delivering the EBI in a school rather than a clinic) or changing the format by which the treatment is delivered (e.g., offering an individual treatment in a group or telephone format). Once implementation teams consider the possible adaptations needed to deliver the EBI within their agency, they are asked to consider the reasons for making the adaptation, identify any specific concerns about the adaptation, identify how the concern will be addressed, and then specify how the adaptation will be made and by whom.

That Preparation phase also includes developing a comprehensive staff training plan. Training the staff who will be involved in delivering the EBI is a crucial step in the implementation process. The quality of staff training can greatly impact the implementation, effectiveness, and ongoing fidelity of the EBI being delivered and is often a difficult task (Beidas et al., 2012; Drahota et al., 2014a). To this end, use of training planners, such as the ACT SMART Training Plan worksheet, can guide implementation teams through systematically planning each component of training.

The third step in the Preparation phase is to develop an implementation plan. Passive implementation efforts often lead to limited implementation or discontinuation of EBIs (Powell et al., 2015). Therefore, many evidence-based implementation strategies have been developed and researched to support the successful implementation of EBIs (Fixsen et al., 2005; Fixsen et al., 2009; Powell et al., 2012; Powell et al., 2015) (Table 12.3).

These strategies vary greatly in their level of involvement, time commitment, cost and feasibility. Yet, research suggests that when discrete and feasible implementation strategies are utilized, successful implementation outcomes are observed, such as knowledge and use of specific EBIs when appropriate, intervention fidelity, provider and client satisfaction with EBI, improved client outcomes, and improved organizational outcomes (Proctor et al., 2011). Therefore, it is critical for implementation teams to select and plan for use of 1–3 specific implementation strategies in order to facilitate the initial implementation of the EBI.

Phase 4: Implementation. The purpose of Phase 4 is for implementation teams to track progress toward completing the adaptation, training, and implementation plans as designed in the previous phase, and evaluate the progress and satisfaction of completing the action steps. For the ACT SMART Implementation Toolkit, implementation teams are asked to complete a brief evaluation survey after each action step has either been completed or when the scheduled due date for the action step has passed. The evaluation survey allows the implementation team to reflect on the progress being made. If the progress is considered satisfactory, the implementation team may wish to continue to follow the plans as previously designed. If the progress is considered to be neutral or challenging, the evaluation with facilitator assistance will guide the implementation team to consider making changes to the adaptation, training, and implementation plans. This is designed to fit the adaptive and dynamic process inherent in the implementation of an EBI within community-based agencies (Aarons et al., 2012).

Phase 5: Sustainment. The purpose of the sustainment phase is to transition efforts from initial EBI implementation to ongoing EBI sustainment within an agency. Sustainment is defined as the (a) capacity to deliver and/or (b) maintain core elements of an intervention (e.g., remain recognizable or delivered at a sufficient level of fidelity or intensity to yield desirable results) after initial implementation support has been withdrawn (Wiltsey-Stirman et al., 2012). For the ACT SMART Implementation Toolkit, once the majority of the implementation tasks have been completed, the ACT SMART facilitator works with the implementation team to identify specific sustainment strategies that will facilitate the continued use of the EBI. This may include continued training in the EBI to new staff hires and ongoing support or supervision of the use of the EBI with current staff and providers. In addition, structural changes to the organization may be necessary to support the sustained use of the EBI and implementation strategies. For example, if fidelity monitoring was the implementation strategy selected to facilitate the uptake of an anxiety CBT protocol within an agency, allowing providers to have time to self-monitor in a systematic manner will be necessary to continue to sustain both the use of the implementation strategy and the EBI. However, the period of sustainment is not entered into until active implementation has been completed and ACT SMART facilitators have concluded their meetings with the agency implementation team.

Conclusion

In conclusion, the ultimate goal for intervention developers, ASD and anxiety researchers, and community agency leaders and clinicians is to increase the quality of life for youth with ASD and co-occurring anxiety disorders and their families. There are a growing number of evidence-based interventions for anxiety and ASD. However, similar to other populations, there is a concerning gap between ASD interventions delivered in research studies and routine care. Traditional unidirectional models of research to practice translation have resulted in minimal public health impact; however, practice-based approaches rooted in implementation science have the potential to bridge this gap. This chapter highlighted the importance of explicit attention to the routine care context in which an intervention could be used and to the process through which evidence-based interventions are developed, selected, implemented, and sustained in routine care. Based on the ASD services and broader dissemination and implementation science research described in this chapter, we recommend that intervention developers consider implementation outcomes during development of innovative interventions for youth with ASD, and community agency leaders utilize a systematic process to facilitate the implementation and sustainment of EBI within their agencies.