Standardized autism spectrum disorder standards created

By Phyllis Hanlon
January 5th, 2022
autism spectrum disorder

To date, no industry standards, selection and measuring tools for autism spectrum disorder (ASD) have existed. However, discussions regarding the creation of such standards began in spring 2020, and summer 2021 marked the rollout of the standard set.

Ivy Chong, Ph.D, BCBA-D, MBA, chaired the working group that developed the Autism Spectrum Disorder Standard Set (ASDSS). She noted that a diverse group of more than 30 experts from the United States, Europe, and Asia, including researchers, psychologists, behavioral analysts and others, participated in the discussions that led to a soft launch in May 2021.

According to Chong, ASD comprises a huge heterogenous population and impacts every individual differently. Access to treatment and views on how ASD should be treated vary widely across the globe, she added. “There is no way for a patient or advocate to know which treatment is best,” she said, pointing out that various therapies affect outcomes and risk adjustment factors.

“The goal is to identify what measures allow the individual, organization, and payors to look at efficiency and effectiveness of treatment.” --Ivy Chong, Ph.D, BCBA-D, MBA, chair, Autism Spectrum Disorder Standard Set group

However, the International Consortium for Health Outcomes Measurement (ICHOM) has created a tool to help practitioners, patients, parents, and advocates better understand ASD and the most appropriate therapeutic approaches to take.

ICHOM develops tools for different medical conditions for professionals, providers, patient advocates, and users to align the most critical measures, assess their impact and how they change, according to Chong. “[ICHOM] is looking to identify what matters most to patients. Patients have a voice in therapeutic gains, meeting outcomes, and what is the functional impact.”

ICHOM looks at the whole patient experience to determine if there is meaningful impact on happiness and everyday living. The organization aligns and selects outcomes in everyday practice.

“The goal is to create standardized outcomes for medical conditions that ensure equity and minimal variability in treatment. They clearly define outcomes, select the appropriate tool sensitive to patient changes during treatment, and compare to peers,” said Chong. To date, the 10-year-old organization has created 39 standardized sets.

The working group determined what enhances care and is agnostic to any therapy, said Chong. “The goal is to identify what measures allow the individual, organization, and payors to look at efficiency and effectiveness of treatment.”

Chong reported that the group examined 10 to 15 outcomes from four different domains. The committee recommended measuring nine health outcomes: restrictive and repetitive behavior; social communication; daily functioning; leisure; quality of life; family functioning; sleep issues; emotional regulation; and anxiety.

The final measures address a range of levels and provide training appropriate to each level for those rendering services. “A” requires the least amount of training; “B” involves four years of training; and “C” mandates a professional degree as well as additional training.

Chong explained that an organization must prepare an infrastructure to collect, enter, aggregate, and analyze data. A couple of organizations are currently conducting pilot studies and expect data within a year, she noted. “There will be iterations regarding the real barriers or feasibility.”

Parents will have access to all the tools and their participation is encouraged. “Some tools will be completed by parents, especially if they are seeking early intervention and depending on the level of difficulty,” Chong said. “The goal is to achieve transparency in measuring the outcomes between the patient and the organization. Parents should have access to every assessment.”

Chong noted that from an organization point of view, this transparency allows the organization to compare patients within a practice and across organizations.

Chong admitted that there are a lot of tools that cut across demographics but only a handful focus on pediatrics. “This highlights the gap in literature and having valid reliable tools for measuring [children],” she said.

Two pilot programs will wrap up by the end of the year and yield some data and benchmarks. Chong said, “Measuring, reporting, and comparing outcomes can help identify best practices.”

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