Indiscriminate characterization of persons with disabilities: strictly nosographic legislation without functional assessment.

Children and adolescents with autism spectrum disorder (ASD) exhibit diverse functioning and share challenges in social communication and repetitive behaviors. Diagnostic classifications do not fully capture their daily strengths and limitations, making functional assessments essential. The International Classification of Functioning, Disability and Health (ICF) highlights activities and participation as fundamental aspects to describe health conditions. TEA-CIFunciona, an ICF based tool, standardizes functional assessment and defines intervention goals for children with ASD in Argentina. This study aims to: 1) describe the functioning of children with ASD across age-based groups and 2) compare functional needs and intervention goals within each subgroup. TEA-CIFunciona was administered in follow-up consultations of children under 16 years of age with a confirmed ASD diagnosis, from 2019 to October 2024. The functional profile of a sample of 497 children and adolescents was established. Functional categories (activities, participation and contextual factors) were compared between two age subgroups. TEA-CIFunciona facilitated the functional assessment, the systematization of data collection necessary to adapt the follow-up of children and adolescents with ASD at national level. It also enabled the identification of individual and group intervention objectives.

Capturing functional information is crucial in childhood disability. The International Classification of Functioning, Disability and Health (ICF) Core Sets promote assessments of functional abilities and disabilities in clinical practice regarding circumscribed diagnoses. However, the specificity of ICF Core Sets for childhood-onset disabilities has been doubted. This study aimed to identify content commonalities and differences among the ICF Core Sets for cerebral palsy (CP), and the newly developed Core Sets for autism spectrum disorder (ASD) and attention-deficit-hyperactivity disorder (ADHD). The categories within each Core Set were aggregated at the ICF component and chapter levels. Content comparison was conducted using descriptive analyses. The activities and participation component of the ICF was the most covered across all Core Sets. Main differences included representation of ICF components and coverage of ICF chapters within each component. CP included all ICF components, while ADHD and ASD predominantly focused on activities and participation. Environmental factors were highly represented in the ADHD Core Sets (40.5%) compared to the ASD (28%) and CP (27%) Core Sets. International Classification of Functioning, Disability and Health Core Sets for CP, ASD, and ADHD capture both common but also unique functional information, showing the importance of creating condition-specific, ICF-based tools to build functional profiles of individuals with childhood-onset disabilities. The International Classification of Functioning, Disability and Health (ICF) Core Sets for cerebral palsy (CP), autism spectrum disorder (ASD), and attention-deficit-hyperactivity disorder (ADHD) include unique functional information. The ICF-based tools for CP, ASD, and ADHD differ in terms of representation and coverage of ICF components and ICF chapters. Representation of environmental factors uniquely influences functioning and disability across ICF Core Sets for CP, ASD and ADHD.

Objective: Perform a systematic review to identify the categories of the International Classification of Functioning, Disability and Health linked to the concepts measured by functional assessment tools validated for Brazilian Portuguese: Timed Up and Go test, Functional Independence Measure, Barthel Index, and Rivermead Mobility Index and Modified Rankin Scale.Methods: The Medline, Embase and CINAHL databases were consulted using a standardized search strategy. The studies were summarized using a pre-established set of specific criteria for the adequate linkage between the concepts identified in the assessment measures and the International Classification of Functioning, Disability and Health categories. Two independent reviewers performed the selection of the studies, data extraction and evaluation of the results.Results: The search of the databanks led to the retrieval of 99 studies. However, only six articles were included in the present review. The linkage results of the studies included in the review were divergent, likely due to the taxonomic complexity of the International Classification of Functioning, Disability and Health, the difficulty in clearly relating the concepts of the assessment measures to the classifications and the fact that not all linkage rules were followed. “Activities and participation” was the most evaluated component, with mobility the most frequently covered category in the measures, followed by self-care. Among the measures analyzed, the Functional Independence Measure addresses a greater number of categories and therefore has the most concepts related to the International Classification of Functioning, Disability and Health, followed by the Barthel Index, Modified Rankin Scale, Rivermead Mobility Index and Timed Up and Go test. The Modified Rankin Scale was the assessment tool that most evaluated categories related to environmental factors.Conclusion: The Functional Independence Measure has more concepts related to the International Classification of Functioning, Disability and Health, since it addresses a greater number of categories. These findings can help guide health professionals in the selection of assessment tools for the evaluation of post-stroke functioning, making viable the use of the International Classification of Functioning, Disability and Health categories in clinical practice and public health services.Implications for rehabilitationThis study standardized identification of the International Classification of Functioning, Disability and Health categories in the main outcome measures used to assess post-stroke functional capacity.Functional Independence Measure has more concepts related to the International Classification of Functioning, Disability and Health compared to other functional assessment instruments.Findings can enable physiotherapists and researchers choose the most appropriate measure that best corresponds to their field of interest.These results facilitate the implementation of the International Classification of Functioning, Disability and Health in clinical practice.Use of International Classification of Functioning, Disability and Health categories can standardize information on functional health.

This study aimed to measure the health and functioning of children with hemophilia in Europe using the International Classification of Functioning, Disability and Health (ICF) and the International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY) as a frame of reference and items from health-related quality-of-life instruments as a measurement tool within a European data set. Based on the results of linkage of items from the hemophilia-specific health-related quality-of-life questionnaire for children and adolescents to ICF/ICF-CY, the categories most relevant for the description of health and functioning of children with hemophilia were identified for each domain of the ICF/ICF-CY. Using data from the European Study of Clinical, Health, Economic, and Quality-of-Life Outcomes of Hemophilia treatment on 446 children, the frequency of impairments in body structures and body functions, restrictions in activities and participation, and barriers in contextual factors were calculated. In general, the frequency of impairments, restrictions, and barriers was low in the studied population of children with hemophilia. However, the level of restriction as well as barriers was higher than the level of impairments. Older children, children receiving on-demand treatment, and children with severe hemophilia tended to have more problems compared with younger children, children receiving prophylaxis treatment, and children with mild to moderate hemophilia. Using items from quality-of-life instruments with the ICF-CY as a frame of reference proved to be a useful approach for the assessment of health and functioning in children with hemophilia.

Background: The new special educational needs and disability legislation in England has introduced Education Health and Care plans as statutory documents for children with special educational needs, and has extended provision beyond compulsory education, placing transition in a compelling position. This policy recognises the need to include the views, wishes and aspirations of children and young people in the development of provision to cater for their needs. For young people with autism spectrum disorders and their families, transition to post-16 education and employment could be challenging. This study aimed to explore how voices of young people with autism spectrum disorders are captured in their Education Health and Care plans.Methods: These views were collected from the Education Health and Care plans of 12 young people with autism spectrum disorders. These plans were analysed inductively and deductively through content analysis, using the International Classification of Functioning, Disability and Health: Children and Youth Version as a coding framework.Results: Discrepancies were found between plans concerning the ways in which the voices of young people with ASD were elicited. A total of 189 functioning codes were identified, with a prevalence of activities and participation codes to reflect their views, followed by body functions and lastly environmental factors.Conclusion: These disparities are discussed in light of the biopsychosocial model of functioning and health, and the new English policy. Implications for adopting the International Classification of Functioning framework to give voice to young people with autism spectrum disorders are also discussed.Implications for rehabilitationYoung people with autism spectrum disorders face many challenges in their transition to post-16 education and employment.Engaging young people with autism spectrum disorders in matters that affect their own lives contribute to the development of provision that is aligned with their wishes and aspirations.Practitioners collaborating in the development of Education Health and Care plans should ensure that young people are effectively involved in the development of their own plans.The International Classification of Functioning, Disability and Health, Children and Youth Version provides a systematic framework and language for coding and recording data from different sources with which to capture young people’s views.

Purpose: The ICF (International Classification of Functioning, Disability and Health) framework (used worldwide to describe ‘functioning’ and ‘disability’), including the ICF scheme (visualization of functioning as result of interaction with health condition and contextual factors), needs reconsideration. The purpose of this article is to discuss alternative ICF schemes.Method: Reconsideration of ICF via literature review and discussions with 23 Dutch ICF experts. Twenty-six experts were invited to rank the three resulting alternative schemes.Results:The literature review provided five themes: 1) societal developments; 2) health and research influences; 3) conceptualization of health; 4) models/frameworks of health and disability; and 5) ICF-criticism (e.g. position of ‘health condition’ at the top and role of ‘contextual factors’). Experts concluded that the ICF scheme gives the impression that the medical perspective is dominant instead of the biopsychosocial perspective. Three alternative ICF schemes were ranked by 16 (62%) experts, resulting in one preferred scheme.Conclusions: There is a need for a new ICF scheme, better reflecting the ICF framework, for further (inter)national consideration. These Dutch schemes should be reviewed on a global scale, to develop a scheme that is more consistent with current and foreseen developments and changing ideas on health.Implications for RehabilitationWe propose policy makers on community, regional and (inter)national level to consider the use of the alternative schemes of the International Classification of Functioning, Disability and Health within their plans to promote functioning and health of their citizens and researchers and teachers to incorporate the alternative schemes into their research and education to emphasize the biopsychosocial paradigm.We propose to set up an international Delphi procedure involving citizens (including patients), experts in healthcare, occupational care, research, education and policy, and planning to get consensus on an alternative scheme of the International Classification of Functioning, Disability and Health.We recommend to discuss the alternatives for the present scheme of the International Classification of Functioning, Disability and Health in the present update and revision process within the World Health Organization as a part of the discussion on the future of the International Classification of Functioning, Disability and Health framework (including ontology, title and relation with the International Classification of Diseases).We recommend to revise the definition of personal factors and to draft a list of personal factors that can be used in policy making, clinical practice, research, and education and to put effort in the revision of the present list of environmental factors to make it more useful in, e.g., occupational health care.

Beyond expert suggestions as to the appropriate subject matter for chronic pain assessments, little is known about the actual content of multidisciplinary pain centre (MPC) clinical assessments. The International Classification of Functioning, Disability and Health Low Back Pain Core Set (ICF LBP-CS) provides a universal language to support the consistent description of LBP-related assessments across disciplines within multidisciplinary teams (MDTs). This study sought to map the content of MPC clinical assessments to the ICF to: (1) identify and compare the content of clinical MDT assessments using a cross-disciplinary framework and (2) examine the content validity of the LBP-CS. A qualitative examination of MPC team clinical assessments of chronic low back pain was undertaken. Multidisciplinary team (pain medicine, psychiatry, nursing, physiotherapy, occupational therapy, and psychology) assessments were audio-recorded and transcribed. Concepts were extracted from transcripts using a meaning condensation procedure and then linked to the ICF. Across 7 MDT assessments, comprised 42 discipline-specific assessments and 241,209 transcribed words, 8596 concepts were extracted. Contextual factors (ie, the person and environment), except for physiotherapy, accounted for almost half of each discipline's assessments (range: 49%-58%). Concepts spanned 113 second-level ICF categories, including 73/78 LBP-CS categories. Overall, the findings revealed novel insights into the content of MPC clinical assessments that can be used to improve health care delivery. International Classification of Functioning, Disability and Health-based assessment profiles demonstrated unique contributions from each discipline to chronic low back pain assessment. Finally, users of the LBP-CS can be confident that the tool exhibits sound content validity from the perceptive of MDT assessments of functioning, disability, and health.

Toward Harmonization of the Nutrition Care Process Terminology and the International Classification of Functioning, Disability and Health−Dietetics: Results of a Mapping Exercise and Implications for Nutrition and Dietetics Practice and Research

The needs of children with autism spectrum disorder (ASD) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children's progress. Relevant outcomes include improvement in core ASD impairments, such as communication, social awareness, sensory sensitivities and repetitiveness; skills such as social functioning and play; participation outcomes such as social inclusion; and parent and family impact. To examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years. To identify outcome areas regarded as important by people with ASD and parents. The MeASURe (Measurement in Autism Spectrum disorder Under Review) research collaboration included ASD experts and review methodologists. We undertook systematic review of tools used in ASD early intervention and observational studies from 1992 to 2013; systematic review, using the COSMIN checklist (Consensus-based Standards for the selection of health Measurement Instruments) of papers addressing the measurement properties of identified tools in children with ASD; and synthesis of evidence and gaps. The review design and process was informed throughout by consultation with stakeholders including parents, young people with ASD, clinicians and researchers. The conceptual framework developed for the review was drawn from the International Classification of Functioning, Disability and Health, including the domains 'Impairments', 'Activity Level Indicators', 'Participation', and 'Family Measures'. In review 1, 10,154 papers were sifted - 3091 by full text - and data extracted from 184; in total, 131 tools were identified, excluding observational coding, study-specific measures and those not in English. In review 2, 2665 papers were sifted and data concerning measurement properties of 57 (43%) tools were extracted from 128 papers. Evidence for the measurement properties of the reviewed tools was combined with information about their accessibility and presentation. Twelve tools were identified as having the strongest supporting evidence, the majority measuring autism characteristics and problem behaviour. The patchy evidence and limited scope of outcomes measured mean these tools do not constitute a 'recommended battery' for use. In particular, there is little evidence that the identified tools would be good at detecting change in intervention studies. The obvious gaps in available outcome measurement include well-being and participation outcomes for children, and family quality-of-life outcomes, domains particularly valued by our informants (young people with ASD and parents). This is the first systematic review of the quality and appropriateness of tools designed to monitor progress and outcomes of young children with ASD. Although it was not possible to recommend fully robust tools at this stage, the review consolidates what is known about the field and will act as a benchmark for future developments. With input from parents and other stakeholders, recommendations are made about priority targets for research. Priorities include development of a tool to measure child quality of life in ASD, and validation of a potential primary outcome tool for trials of early social communication intervention. This study is registered as PROSPERO CRD42012002223. The National Institute for Health Research Health Technology Assessment programme.

The validity of functional assessments of communication and the Activity/Participation components of the ICIDH-2: do they reflect what really happens in real-life?

Goal. Analysis of the development of rehabilitation infrastructure in the Russian Federation, including organizations of various departmental affiliations and forms of ownership, providing rehabilitation services to children with autism spectrum disorders (ASD).
 Methods.Analytical: the level of primary child disability due to mental and behavioral disorders, including ASD, was studied in the Russian Federation for 2017-2019. according to the official statistics of the Ministry of Labor of Russia. The work of 1,788 organizations providing rehabilitation measures to children with ASD is analyzed based on Federal Resource Center for the Organization of Comprehensive Support for Children with Autism Spectrum Disorder (as of October 2019). Rehabilitation infrastructure for children with ASD is grouped by Federal Districts and presented in the diagrams. The data of the Federal Resource Center for the Organization of Comprehensive Support for Children with Autism Spectrum Disorder (as of October 2019) were used.
 Results. The data were obtained on the growth of the level of primary disability among children with mental and behavioral disorders, including autism, in the Russian Federation. Rehabilitation activities for children with ASD are provided by organizations of various departmental affiliations: education (91%), social protection (3%), healthcare (0.5%), culture and sports (0.6%), non-profit organizations (5%). The most developed rehabilitation infrastructure for children with ASD has developed in the education system. For coordination and methodological guidance, 23 regional resource centers for people with ASD were created, of which 87% are in the field of education, 13% in the social protection system.
 Conclusion.In modern Russia, there is an increase in the disability of children with mental and behavioral disorders, including autism, in this regard, the rehabilitation infrastructure for children with ASD is intensively developing. At the same time, the network of regional resource centers needs to be developed. There is a need for a unified comprehensive approach to assessing the condition, identifying needs and implementing rehabilitation measures for children with ASD, which is applicable both in departments and at the interdepartmental level. The International Classification of Functioning, Disabilities and Health (WHO, 2001) is such a universal language for interdepartmental and interdisciplinary interaction.

Autism spectrum disorder (ASD) is characterized by impairments in many functional areas requiring long-term interventions to promote autonomy. This study aims to map The Sensory Profile™ 2 (SP-2), one of the most widely used assessment tools in children with ASD, with the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY), developed by the World Health Organization (WHO). This will allow the identification of the functional dimensions covered by this instrument and the comparison with the ICF shortlist proposed for autism (ICF Core Set [ICF-CS]). The deductive content analysis described in the ICF Linking Rules was followed, along with a systematized process including statistical and reasoning techniques that could contribute to the improvement of ICF linking studies (Cohen’s Kappa and percentage of agreement). 218 codes were identified, 71% of them were codes related to the body functions chapters, mainly linked to perceptual functions (b160), emotional functions (b152), and temperament and personality functions (b126). Concerning activities and participation chapters (29%) the most frequently used codes were: focusing attention (d160), carrying out daily routine (d230), and walking (d450). Even though the SP-2 items do not assess most of the functional features regarded as essential in the ASD ICF-CS, SP-2 encompasses a majority of problems concerning body functions. This instrument may be considered as part of a multidimensional assessment approach, to complement other sources that are more likely to assess activity and participation dimensions and guide a functional intervention.

The International Classification of Functioning, Disability and Health (ICF) provides a biopsychosocial framework for describing patients' functioning, but its comprehensive structure poses challenges for routine clinical use and health system reporting. In Poland, rehabilitation services lacked a standardized approach to functioning assessment that would support coordinated care and comparable outcome documentation at national level. This paper aims to describe the development and implementation of a tool for the quality assessment of therapeutic rehabilitation in Poland, focusing on the standardisation of patient functioning assessment using the International Classification of Functioning, Disability, and Health (ICF). The study was structured around the creation of functioning assessment standards (categorical profiles), a unified system for planning patient support (intervention sheet), and post-rehabilitation assessment sheets to ensure comprehensive evaluation of rehabilitation effectiveness at individual, hospital, and national levels. Within a national implementation project, we developed an ICF‑based functioning assessment system for inpatient and outpatient rehabilitation, including categorical profiles for major rehabilitation types, auxiliary tools (Short Intuitive Descriptions, rating guides, conversion protocols) and a dedicated IT application. The system was pilot‑tested in 12 rehabilitation centres (1 800 patients; 1 200 inpatients and 600 outpatients) using pre‑ and post‑rehabilitation assessments and WHO's WHODAS 2.0 questionnaires. The pilot indicated that ICF‑based categorical profiles were feasible to use in routine practice and sensitive to changes in patients' functioning over the course of rehabilitation. The system differentiated outcomes between centres and showed moderate to high inter‑rater agreement for most ICF categories, with several codes reaching very high ICC values, which require cautious interpretation. WHODAS 2.0 scores were broadly consistent with ICF‑based profiles, particularly in activity and participation domains. This pilot suggests that an ICF‑based functioning assessment system can support more standardized, biopsychosocially oriented rehabilitation in Poland, while highlighting important implementation challenges, including resource demands, staff training needs and difficulties in assessing environmental factors. Further research is needed to establish long‑term outcomes, refine psychometric properties and evaluate cost‑effectiveness of system‑wide implementation.

For many transgender individuals, medical intervention is necessary to live as their desired gender. However, little is known about Contextual Factors (i.e., Environmental and Personal) that may act as facilitators and barriers in the health of transgender individuals. Therefore, this paper sought to examine Contextual Factors of the World Health Organization's International Classification of Functioning, Disability, and Health that may facilitate or negatively impact the physical, psychological, and social functioning of transgender individuals. A literature review was conducted to identify Environmental and Personal Factors that may influence transgender individuals' physical, psychological, and social functioning. Seven electronic databases were searched. In total, 154 records were reviewed, and 41 articles and other records met inclusion criteria. Three general themes emerged for Environmental Factors: family and social networks, education, and health care. Three general themes also emerged for Personal Factors: socioeconomic status, race, and age. Transgender individuals benefit from gender-affirming services, improved family and social support systems, and competent provider care. Educational training programs, including medical curricula or workshops, might provide the greatest benefit in improving transgender health by increasing the knowledge and cultural competency of health professionals working with this population. Given the diversity of gender expression, differences in lived experiences, and potential for enduring persistent "double discrimination" due to the intersectional relationships between socioeconomic status, race, and/or age, health professionals must approach transgender health using a holistic lens such as the World Health Organization's International Classification of Functioning, Disability, and Health.

Background: Autism spectrum disorder (ASD) affects the daily functioning of children and their families; however, in Argentina, there are no standardized tools to guide the description, evaluation, and follow-up of functioning and disability of children with ASD. To fill this gap, the overarching purpose of this study was to create a novel tool guided by the International Classification of Functioning, Disability, and Health (ICF) Core Sets for ASD for clinical practice. Methods: A multistep methodology was used to identify the most relevant ICF categories for an Argentinian clinical setting. The content of this ICF-based shortlist was piloted and revised according to the results. Subsequently, a toolbox of measures was proposed to operationalize each ICF category. Finally, profiles of the functioning of 100 children with ASD were created. Results: An ICF-based tool called TEA-CIFunciona was created, consisting of 32 ICF categories (10 body functions, 15 activities and participation, 7 environmental factors categories). The application of TEA-CIFunciona incorporated a family-centered approach in ASD evaluations and helped identify functional needs. Conclusions: TEA-CIFunciona is the first ICF-based instrument that guides the description of functioning of children with ASD in Argentina. TEA-CIFunciona standardizes collaborative assessments in pediatric ASD populations in Latin American contexts.