Search

Aim: To conduct the first revision of the World Health Organization International Classification of Functioning, Disability and Health (ICF) Core Sets for attention-deficit/hyperactivity disorder (ADHD)., Method: A Delphi-like method was used, integrating evidence from stakeholder feedback and developing and piloting the ADHD ICF Core Set platform to inform revisions to the ADHD Core Sets., Results: A total of 27 second-level ICF codes were added to the comprehensive ADHD Core Set: body functions of temperament and personality, and basic sensory functions; activities and participation in terms of learning to read and write, spoken communication, community life, religion and spirituality, education, economy, and human rights; environmental factors for domestic animals; and several societal services. The revised comprehensive Core Set contains 98 ICF codes: 18 body function codes; 47 activities and participation codes; and 33 environmental factor codes. Extensive changes were also made to the age-appropriate brief Core Sets to allow their independent use in research and clinical practice., Interpretation: Although substantially expanded, the revised ICF Core Sets better reflect the lived experience of individuals with ADHD and clinical implementation preferences than the initial sets. We recommend further feasibility and validation studies of these Core Sets with the goal of optimizing their acceptance and practicability, and strengthening their evidence base., (© 2024 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

Lay Abstract: The International Classification of Functioning, Disability, and Health (ICF) is a framework designed by the World Health Organization (WHO) to help different sectors, such as healthcare, social services, education, and policy, understand how people with health-related issues function (do the things they want to and need to do) in their daily lives. This framework has also been used to guide clinical practice and research in autism and attention-deficit hyperactivity disorder (ADHD). To make it more practical, shorter versions of the ICF called Core Sets have been developed. We wanted to explore how the ICF and the ICF Core Sets have been used in research relating to autism and ADHD. We looked at the research that had been previously published on this topic by conducting a systematic search and review. Seventy-eight studies meeting our criteria were included in our review. Results show that the ICF has been applied in many ways across various contexts. However, most of the research has focused on autism, mainly involving children. The review highlights that although the ICF was used in some studies, the underlying philosophies of the framework were not always followed. The medical perspective still influenced the way research was done and interpreted. Nevertheless, using the ICF in the right way can help shift research on neurodevelopmental conditions like autism and ADHD toward a more holistic approach, moving away from solely focusing on medical aspects., Competing Interests: Declaration of conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: The authors report no conflict of interest related to the work presented. Sven Bölte discloses that he has in the last 3 years acted as an author, consultant, or lecturer for Medice and LinusBio. He receives royalties from Hogrefe, UTB, Ernst Reinhardt, Kohlhammer, and Liber. Bölte is a partner in NeuroSupportSolutions International.

Lay Abstract: Autistic people experience individual strengths and challenges as well as barriers and facilitators in their environment. All of these factors contribute to how well autistic people can cope in everyday life, fulfill the roles they choose, and meet their needs. The World Health Organization has developed a system aiming to capture the many factors within people (like how someone thinks and feels) and outside of people (things around a person) that influence their daily living, called the International Classification of Functioning, Disability and Health. The International Classification of Functioning, Disability and Health can be used for different purposes in research and practice to assess people's situations and plan support measures. Previously in 2019, the International Classification of Functioning, Disability and Health was adapted to autism by developing so-called Core Sets, which are shorter International Classification of Functioning, Disability and Health versions for use in specific conditions. Here, we present the first revisions of the International Classification of Functioning, Disability and Health Core Sets for autism, based on research, development results, and community feedback. Some factors influencing daily life for autistic people were added to the Core Sets, and other factors deemed less relevant were removed. Changes were also made in Core Sets designed for different age groups (0-5, 6-16, and ⩾17 years). Particularly, contents for sensory processing (like smell, touch, seeing, hearing) were added. We recommend these updated Core Sets for future use in autism research and practice. These changes to the Core Sets after 4 years indicate that there should be ongoing updates based on research and experience from practice and involvement of stakeholders., Competing Interests: Declaration of conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: S.B. discloses that he has in the last 3 years acted as an author, consultant, or lecturer for Medice and Linus Bio. He receives royalties for textbooks and diagnostic tools from Hogrefe, Liber, Ernst Reinhardt, Kohlhammer, and UTB. He is a partner in NeuroSupportSolutions. P.B.M. receives royalties for textbooks from Elsevier, Springer, Mac Keith Press, and Thieme. The other authors have no conflicts of interest to report.

Purpose: A considerable number of screening and diagnostic tools for autism exist, but variability in these measures presents challenges to data harmonization and the comparability and generalizability of findings. At the same time, there is a movement away from autism symptomatology to stances that capture heterogeneity and appreciate diversity. The International Classification of Functioning, Disability and Health (ICF) provides a classification system that can support content harmonization of different screening and diagnostic tools for autism while enabling the translation of diagnostic information into functioning., Method: Here we linked commonly used screening and diagnostic measures within the field of autism to the ICF to facilitate the unification of data obtained from these measures., Results: As expected, screening and diagnostic measures primarily focus on body functions and activities and participation domains of the ICF, and much less on environmental factors, reflecting biomedical and adaptive behavior operationalizations of autism derived from diagnostic manuals., Conclusion: By translating symptomology-based information to the continuous and diagnostically neutral view of functioning, the ICF linking presented here may provide a means to harmonize measures of autism characteristics while enabling diagnostic information to be re-examined through a more neurodiversity-affirmative lens., (© 2023. The Author(s).)