Development of a standardized set of outcomes for autism spectrum disorder: The International Consortium for Health Outcomes Measurement (ICHOM)

Background

Autism spectrum disorder (ASD) is characterized by persistent deficits in reciprocal social interaction, communication, and restricted, repetitive, behaviour, that are atypical or excessive for the individual’s age and sociocultural context (Diagnostic and Statistical Manual 5th ed TR.; 2022). The rate of ASD continues to increase and remains a concern due to inequitable access to diagnosis and quality services. A lack of standardization in assessment and treatment presents further difficulty in benchmarking and improving care.

Method

The International Consortium for Health Outcomes Measurement (ICHOM) recruited a Working Group (WG) of 20 subject matter experts, including researchers, clinicians, policy makers, and lived-experience experts to identify a minimum set of measurable outcomes along with case mix variables (i.e., risk adjustment factors). A proposed set of Patient Centered Outcome Measures (henceforth known as the ASD Set) was identified and endorsed using a modified Delphi process to reach consensus.

Results

The WG took into consideration variation in global health, social care and educational systems were considered to ensure implementation of the ASD Set is feasible. The Set includes a core set of measurable outcomes (i.e., domains) that include core symptoms, daily functioning, accessibility, and support.

Conclusions

The ICHOM ASD Set is a scientifically-sound, internationally vetted tool that will enable assessment of care for individuals with ASD that can facilitate targeted, person-centered clinical and social inclusion strategies. Large scale implementation and use should generate standardized data describing the individual's health and wellbeing that can inform decision-making, quality improvement and best-practices insights.