Purpose

This study describes the development of four age-based item code sets from WHO's International classification of functioning disability and health, children and youth version (ICF-CY). Given the continuing goal of universal implementation of the ICF-CY, a reduced set of codes was identified from more than 1600 codes to facilitate the use of the classification for clinical, research and policy applications of the ICF-CY

Methods

The ICF-CY developmental code sets were developed by consensus using the Delphi method. A multi-disciplinary group of international experts representing 27 countries from 5 WHO world regions completed a series of iterative online surveys to rate categories of child functioning essential for inclusion in the respective age-based code set.

Results

Four age-based code sets covering 37, 52, 60 and 57 codes across four domains of the ICF-CY were successfully derived with a high level of participant consensus. The code sets align with developmental theory and represent essential indicators of functioning defining key stages of child development.

Conclusion

The ICF-CY developmental code sets offer a common, universal language of childhood functioning and disability with global application for multidisciplinary research, clinical practice and policy.

Implications for rehabilitation

Broad umbrella terms, such as children with disabilities, neurodiversity and neurodevelopmental disabilities are widely used in the literature but not defined in a consistent, universal language.

Codes from the International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY) offer a universal language of health and functioning.

ICF-CY item codes were developed by consensus for four age groups of children, providing a universal language of disability for:

• epidemiological studies of disability prevalence
• screening and assessment tools
• documenting intervention goals and outcomes

In the early years of life, children’s interactions with the physical and social environment-including families, schools and communities—play a defining role in developmental trajectories with long-term implications for their health, well-being and earning potential as they become adults. Importantly, failing to reach their developmental potential contributes to global cycles of poverty, inequality, and social exclusion. Guided by a rights-based approach, this narrative review synthe-sizes selected studies and global initiatives promoting early child development and proposes a universal intervention framework of child-environment interactions to optimize children’s developmental functioning and trajectories.

In line with the primary purpose of ISEI, to provide a framework and forum for professionals from around the world to communicate about advances in the field of early intervention, this symposium aims to discuss and raise issues related to the added value of international collaboration in early childhood intervention research and education today and in the future. It is informed by experiences of the EU-US Transatlantic Consortium on Early Intervention (EU-US Atlantis Programme, Excellence Mobility Project 2001-2013) and from collaboration in ISEI. Building on multilateral collaboration and agreements between universities and funding agencies, based on equal standards for quality we can share and learn from each other. By developing joint priorities building on the strengths in individual countries a common theoretical framework for research and education related to early intervention has been created guiding policy and practice.

The International Classification of Functioning, Disability and Health (ICF) offers a universal language of codes to document childhood functioning. The ICF-CY Code Set for Infants with Early Delay and Disabilities (EDD Code Set) has been developed to facilitate the practical application of the ICF for children. The purpose of this study was to examine the utility of the EDD Code Set by exploring the linkage between ICF and children's assessment reports. We reviewed 30 Comprehensive Assessment Reports (CAR) for children with developmental delay (DD), aged 9-34 months in a joint evaluation center. Meaningful concepts in compulsory and supplementary sections of the CAR were identified and linked to the EDD Code Set. Linkage was measured by (a) number of linked codes and (b) average of code-only and code-with-qualifier percentages. Content in the CAR was linked to 72 of the 82 EDD codes with more codes linked from the supplementary (71) than the compulsory section (58). The largest proportion of linked codes was activities and participation (85%). The EDD Code Set can be used to examine the ICF linkage of pediatric assessment reports and guide future development or revision of pediatric documentation and participation-based intervention. 

Observational cross-sectional study carried out in a pediatric neurodevelopment unit of a tertiary-care hospital. A sample of 355 children with median ((min.–max.) 1.0–17.3) years with intellectual disability (30.4% borderline, 43.1% mild, 19.7% moderate, 5.1% severe, and 1.7% profound disability) was seen over a period of 3 years. Based on clinical observation and psychological evaluation, a neurodevelopmental pediatrician selected ICF-CY body functions codes, and respective qualifiers, to effectively describe functioning of children. Based on evaluation reports, a psychologist and a special educator assigned the previously chosen ICF-CY body functions codes to 139 and 67 children, respectively. Inter-rater agreement was estimated using simple and weighted Cohen's kappa coefficients and Gwet's AC1 statistic and Gwet's weighted kappa coefficient statistic. A set of eight ICF-CY codes was identified as efficiently describing impairments of body functions of children with intellectual disability: global mental functions b117 and b122; specific mental functions b147, b163, b164, and b167; and voice and speech functions b320 and b330. Results indicate a correspondence between the level of severity of qualifiers assigned to ICF-CY codes and the level of intellectual disability. Inter-rater agreement was variable among raters, with the best agreements found for qualifying intellectual functions (b117) and psychomotor functions (b122). A profile of eight ICF-CY codes effectively describes functioning of children with intellectual disability, providing an alternative to medically based classification, based on diagnoses with functionally based classification of children's characteristics. The findings contribute to define a comprehensive set of codes to reliably record individual differences of functioning in this population.

Purpose: The aim of this article is to examine the component of “personal factors” described as a contextual factor in the ICF and ICF-CY.

Methods: A critical examination of the construct of “personal factors” and description of the component was made with reference to conceptual and taxonomic criteria.

Results: The “personal factors” component in the ICF/ICF-CY is not defined, there is no taxonomy of codes, there is no explicit purpose stated for its use and no guidelines are provided for its application. In spite of these constraints, the component of “personal factors” is being applied as part of the classifications. Such uncontrolled applications constitute significant risks for the status of ICF/ICF-CY as the WHO reference classification in that: (a) the component is accepted for use by default simply by being applied; (b) component content is expanded with idiosyncratic exemplars by users; and (c) there is potential misuse of “personal factors” in documenting personal attributes, including “blaming the victim”.

Conclusion: In the absence of formal codes, any application of the component of “personal factors” lacks the legitimacy that documentation with a scientific taxonomy should provide. Given the growing use of the ICF/ICF-CY globally, a priority for the revision process should be to determine if there is in fact need for “personal” or any other factors in the ICF/ICF-CY.