Introduction
Autism spectrum disorder (ASD) is a developmental condition that affects how a person communicates, interacts, and behaves with others. ASD can have a significant impact on the functioning and quality of life of individuals and their families. Therefore, it is important to assess the level of support that children with ASD need to participate in everyday activities across different contexts.
One way to assess functioning is to use the International Classification of Functioning, Disability and Health (ICF), a comprehensive biopsychosocial framework that classifies health-related functioning in a holistic manner. The ICF consists of three components: body functions, activities and participation, and environmental factors. Body functions refer to the physiological and psychological functions of the body systems. Activities and participation refer to the execution of tasks and involvement in life situations. Environmental factors refer to the physical, social, and attitudinal aspects of the environment that can facilitate or hinder functioning.
The ICF also provides sub-sets of relevant codes for specific health conditions, called the ICF Core Sets (ICF-CSs). The ICF-CSs are intended to provide a common language and a standardised way of measuring and reporting functioning for different groups of people. However, the ICF-CSs are not yet widely used in clinical practice or research, and their validity and applicability need to be tested in different populations and settings.
The aim of this study was to validate the ICF-CSs for autism in a sample of Australian school-aged children on the spectrum. The study combined the ICF-CSs for autism, attention deficit hyperactivity disorder (ADHD), and cerebral palsy (CP), which are the three most common neurodevelopmental disorders in children. The study also examined the clarity and comprehensibility of the language used in the ICF-CSs for autism.
Methods
The study used a cross-sectional design, involving caregivers of school-aged children on the spectrum (n=70) who completed an online survey and were visited in their homes by an occupational therapist. The online survey collected demographic and clinical information about the children and their families, as well as their perspectives on the usefulness and relevance of the ICF-CSs for autism. The home visit involved the occupational therapist administering a proxy-report measure based on the ICF-CSs for autism, ADHD, and CP. The measure consisted of 105 items, covering 35 body functions, 42 activities and participation, and 28 environmental factors. The items were rated on a 5-point Likert scale, ranging from 0 (no problem) to 4 (complete problem), or not applicable (NA).
The data analysis included calculating the absolute and relative frequencies of ratings for each item, as well as the number of participants who required clarification to understand the terminology used. The analysis also compared the ratings between the three components of the ICF-CSs, and between the three groups of ICF-CSs (autism, ADHD, and CP).
Results
The results showed that the body functions and activities and participation represented in the ICF-CSs for autism were the most applicable and relevant for the sample. The most frequently reported problems in body functions were related to emotional functions, attention functions, and higher-level cognitive functions. The most frequently reported problems in activities and participation were related to interpersonal interactions and relationships, communication, and learning and applying knowledge. The environmental factors were less applicable and relevant for the sample, as most of them were rated as NA or no problem. The most frequently reported facilitators in environmental factors were related to products and technology, support and relationships, and services, systems, and policies. The most frequently reported barriers in environmental factors were related to attitudes and natural environment.
The results also showed that some items not currently included in the ICF-CSs for autism may warrant further investigation, as they were rated as problems by a substantial proportion of the sample. These items were mainly from the ICF-CSs for ADHD and CP, and were related to sleep functions, temperament and personality functions, mobility, self-care, domestic life, and education.
The results also showed that the language used in the ICF-CSs for autism was not clear and comprehensible for many participants, as they required clarification for 40% of the items. The most common sources of confusion were the use of technical terms, abbreviations, and vague or ambiguous expressions.
Discussion
The study provided some evidence for the validity and applicability of the ICF-CSs for autism in an Australian sample of school-aged children on the spectrum. The study confirmed that the ICF-CSs for autism captured the most relevant aspects of functioning for this population, especially in the domains of body functions and activities and participation. However, the study also suggested that the ICF-CSs for autism may need to be revised and expanded to include some additional items that reflect the diversity and complexity of functioning in ASD. Moreover, the study highlighted the need to improve the clarity and comprehensibility of the language used in the ICF-CSs for autism, to ensure that they are user-friendly and accessible for different stakeholders.
The study had some limitations, such as the small and convenience sample, the use of a proxy-report measure, and the lack of comparison with other measures of functioning. Future studies should use larger and more representative samples, include self-report measures, and compare the ICF-CSs for autism with other existing tools and frameworks.
Conclusion
The study validated the ICF-CSs for autism in a sample of Australian school-aged children on the spectrum, and identified some areas for improvement and further research. The study demonstrated the potential of the ICF-CSs for autism as a comprehensive and holistic way of assessing and reporting functioning in ASD, which can inform the provision of appropriate and individualised support and services for this population.
Faq
What are the ICF-CSs for autism?
The ICF-CSs for autism are a set of codes from the ICF framework that are relevant for describing the functioning of people on the autism spectrum. The ICF-CSs for autism were developed by an international and multidisciplinary expert group, based on a systematic literature review, a qualitative study, and a consensus process. The ICF-CSs for autism consist of 25 codes for body functions, 29 codes for activities and participation, and 15 codes for environmental factors.
What are the benefits of using the ICF-CSs for autism?
The benefits of using the ICF-CSs for autism are:
- They provide a comprehensive and holistic way of assessing and reporting functioning in ASD, across the components of body functions, activities and participation, and environmental factors.
- They provide a common language and a standardised way of measuring and reporting functioning for different stakeholders, such as clinicians, researchers, educators, policy makers, and service providers.
- They facilitate the identification of the strengths and needs of individuals on the spectrum, and the provision of appropriate and individualised support and services.
- They enable the comparison of functioning across different populations and settings, and the evaluation of the effectiveness of interventions and programs.
What are the challenges of using the ICF-CSs for autism?
The challenges of using the ICF-CSs for autism are:
- They are not yet widely used in clinical practice or research, and their validity and applicability need to be tested in different populations and settings.
- They may need to be revised and expanded to include some additional items that reflect the diversity and complexity of functioning in ASD.
- They may not capture the subjective and dynamic aspects of functioning, such as personal preferences, goals, and motivations.
- They may use language that is not clear and comprehensible for different stakeholders, such as technical terms, abbreviations, and vague or ambiguous expressions.
source:
https://link.springer.com/article/10.1007/s10803-024-06295-5