On September 7, 2021, the International Consortium for Health Outcomes Measurement (ICHOM) launched a standardized Autism Spectrum Disorder Standard Set (ASDSS). The rollout of this set marks an important, proactive step towards promoting data quality and availability across the industry. The ASDSS will strengthen autism care and provide a cohesive set of standards that ICHOM will implement globally.
Throughout the past two years, ICHOM experts worked together to identify standards that will positively impact the quality of life for autistic individuals, while driving value-based healthcare globally. These experts included leading researchers, psychologists, behavioral analysts, and service user representatives from across Europe, the Americas and Asia. The ASDSS is the first international standard for measuring treatment outcomes for autism spectrum disorders of children and adults over 18 months old.
Dr. Ivy Chong, BCBA-D, chair of the working group, expressed her gratitude for being part of the development of this set. “It was a privilege and incredibly humbling to chair the working group for the development of the ASDSS. While we recognize this set is a work in progress, I hope the adoption and implementation of these standards will align patients, providers, and payers alike, to drive access to an enhanced standard of care for individuals, no matter the setting,” said Chong. “I look forward to continuing this work for years to come and thank the sponsors, project team and ICHOM leadership for making this possible.”
The ASDSS has two similar tracks for implementation in countries that use specific tools in existing reimbursement models and for those without. Both tracks will measure the same outcomes and they will be risk adjusted with the same factors, however:
- Track A recommends tools with cost associated with them to match existing tools in the current reimbursement models
- Track B recommends tools that are free or have a low cost.
Each track will be further explained in the upcoming ICHOM ASD Webinar.
The Autism Spectrum Disorder Standard Set
The ASDSS provides a set of recommendations for how treatment outcomes should be measured in clinical practice. It recommends measuring nine health outcomes covering four domains.
The nine health outcomes include:
- Restricted and Repetitive Behaviors
- Social Communication
- Daily Functioning
- Quality of Life
- Family Functioning
- Emotional Regulation
- Sleep Issues
For this purpose, it recommends a set of patient- and clinician-reported outcome measures. To help ensure the ASDSS is effective across different intervention contexts, the working group also recommends 15 risk adjustment factors, to be collected along with the outcomes, as well as timepoints for measurement.
Measuring, reporting, and comparing these outcomes can help identify best practices for autism spectrum disorder, ultimately generating increased value and outcomes for service users. The selected outcome measures are available in several languages, allowing the ASDSS to have increased adoption across various countries.
An open source Reference Guide is available that outlines recommendations for administering the set, time points and a data dictionary for organizations to begin implementation.
The ICHOM ASD Working Group
The ASDSS was developed by a dedicated ICHOM Working Group, comprised of twenty-two subject-matter experts and service user representatives. A full list of organizations and representatives involved in this working group is available here.
Consumer Review Period
The working group’s recommendations were validated during an open review period by a large group of external stakeholders from around the world. Over 85% of behavior analysts, psychiatrists, psychologists, occupational therapists, and researchers approved the recommended outcomes and over 75% of the stakeholders agreed with the recommended measures. Finally, over 85% of the external stakeholders agreed that these outcomes and measures in Track A were feasible to collect in clinical practice.
The Future of ASDSS
From its inception, ICHOM has made the ASDSS open source. Now that this recommendation is finalized, the real work can begin, ushering in a new season for value-based autism care. It will be invaluable to learn from implementation pilots that may emerge across the globe and inform future iterations of this global set of standards.
James Heywood, ICHOM board member, says “I am honored to have witnessed the very challenging process to get to a consensus standard for Autism led by Dr. Chong and the working group. Developing a standard is a largely thankless task requiring integrating many disparate and conflicting views into something that becomes a foundation for future knowledge. The process requires all constituents to accept the standard set and enables the beginning of true knowledge.”
This collaboration was facilitated by ICHOM and the independent project was made possible by generous contributions from the following organizations: Hopebridge, United States; InBloom Autism Services, United States; Trumpet Behavioral Health, United States; Learn Behavioral, United States; Center for Autism & Related Disorders (CARD), United States; Autism Learning Partners, United States; Centria Autism, United States. The ICHOM ASDSS sponsors are invested to ensure that the best care is provided in the ASD space.
The sponsors recognize that the only way to test this is the creation of a standardized method of collecting outcomes in the ASD space that are agreed and meaningful to patients, can be deployed and, that are sensitive to improved intervention. The sponsors are also aware that in the past, ASD is typically not designed to be the space of collaboration, however they have found that this project is a model of collaboration and although this is the beginning of the process they are really looking forward to furthering this outcome set alongside other providers and organization to standardize outcome measurement.
ICHOM ASD Webinar
ICHOM will be hosting a free webinar to present the newly launched ASDSS where there will be discussion around project inception, ASDSS process, the final standard set, implementation of the set in a global scale.
About The International Consortium for Health Outcomes Measurement
ICHOM’s mission is to unlock the potential of value-based health care by defining global standard sets of outcome measures that matter most to patients and driving adoption and reporting of these measures worldwide to create better value for all stakeholders. ICHOM was founded in 2012 by Professor Michael E. Porter of Harvard Business School, the Boston Consulting Group, and Karolinska Institute.