Hidden in plain sight: personal factors in autism and ADHD - a protocol for extending the ICF Core Sets for autism and ADHD.
Jacintha Tieskens, Melissa H Black, Emma Asp and 5 others
Protocol for extending the ICF Core Sets for autism and ADHD with personal factors (values, beliefs, lifestyle, coping).
No data exist yet. Four preparatory studies, a Delphi consensus, and platform integration are described.
Key findings
1The project plans to develop shortlists of personal factors relevant to functioning in autism and ADHD, to be added to the existing ICF Core Sets.
2The multi-phase process includes four preparatory studies (scoping review, professional survey, qualitative study, cross-sectional multicenter study), an international Delphi consensus, and integration into the ICF CoreSets platform.
Still to come
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What it does not show
This is a protocol. No data have been collected and no results exist. The authors note that in autism and ADHD the boundary between a personal factor and a symptom of the condition is often blurred, for example 'strong interests' could be read as either a personal trait or a diagnostic criterion. There is no universally accepted classification system for personal factors, and the two candidate taxonomies (Geyh, Grotkamp) have not yet been validated for this population. Personal factors relevant to functioning may differ across age groups, making a single universal shortlist difficult to achieve. The qualitative sub-study requires participants to be able to communicate their experiences, with or without augmentative and alternative communication, which may exclude some individuals with intellectual disabilities. The Delphi requires English proficiency, and recruitment runs through the research team's own networks, which may limit global representativeness.
Declared interests
Funded by the Marcus and Amalia Wallenberg Foundation, a Swedish foundation. No industry sponsor is named.
The easy way to misread this
Do not read this as evidence that adding personal factors to the ICF Core Sets improves assessment or outcomes. It is a protocol describing what will be done. No participants have been recruited, no data collected, and no results reported.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →