Aim
The objective of this article is to report on the Core Sets developed for children and youth aged 0 to 18 years, with cerebral palsy (CP) based on the pediatric International Classification of Functioning, Disability and Health (ICF) by the World Health Organization (WHO).
Method
A formal decision‐making and consensus process integrating evidence gathered from preparatory studies was followed. Preparatory studies included: a systematic literature review; an international expert survey; a qualitative study of children and youth with CP and their caregivers; and a clinical study. Relevant ICF categories were identified in a formal consensus process by international experts from different backgrounds. Twenty‐six international experts chosen by WHO region with expertise in CP attended the consensus meeting.
Results
Overall, five ICF Core Sets were developed: a Comprehensive Core Set (135 ICF categories); a Common Brief (25 ICF categories); and three age‐specific Core Sets: under 6 years (31 ICF categories), from 6 to <14 years (35 ICF categories) and from 14 to 18 years (37 ICF categories).
Interpretation
These ICF Core Sets for children and youth with CP are the first ICF‐based tools developed for this population. The ICF Core Sets for children and youth with CP can be applied in clinical practice, research, teaching and administration. The application of the ICF Core Sets to this population will standardize the functional assessments of CP worldwide.
Autism spectrum disorder is associated with diverse social, educational, and occupational challenges. To date, no standardized, internationally accepted tools exist to assess autism spectrum disorder-related functioning. World Health Organization's International Classification of Functioning, Disability and Health can serve as foundation for developing such tools. This study aimed to identify a comprehensive, a common brief, and three age-appropriate brief autism spectrum disorder Core Sets. Four international preparatory studies yielded in total 164 second-level International Classification of Functioning, Disability and Health candidate categories. Based on this evidence, 20 international autism spectrum disorder experts applied an established iterative decision-making consensus process to select from the candidate categories the most relevant ones to constitute the autism spectrum disorder Core Sets. The consensus process generated 111 second-level International Classification of Functioning, Disability and Health categories in the Comprehensive Core Set for autism spectrum disorder-one body structure, 20 body functions, 59 activities and participation categories, and 31 environmental factors. The Common Brief Core Set comprised 60 categories, while the age-appropriate core sets included 73 categories in the preschool version (0- to 5-year-old children), 81 in the school-age version (6- to 16-year-old children and adolescents), and 79 in the older adolescent and adult version (⩾17-year-old individuals). The autism spectrum disorder Core Sets mark a milestone toward the standardized assessment of autism spectrum disorder-related functioning in educational, administrative, clinical, and research settings.
The Comprehensive ICF Core Set for Hearing Loss can be a user-friendly tool for conducting comprehensive, multidisciplinary assessments. The Brief ICF Core Set can be used for many purposes, such as research and population studies. However, its most common use is by individuals seeking to provide a brief description and assessment of functioning of a person with hearing loss.
Given the variability seen in Autism Spectrum Disorder (ASD), accurate quantification of functioning is vital to studying outcome and quality of life in affected individuals. The International Classification of Functioning, Disability and Health (ICF) provides a comprehensive, universally accepted framework for the description of health-related functioning. ICF Core Sets are shortlists of ICF categories that are selected to capture those aspects of functioning that are most relevant when describing a person with a specific condition. In this paper, the authors preview the process for developing ICF Core Sets for ASD, a collaboration with the World Health Organization and the ICF Research Branch. The ICF Children and Youth version (ICF-CY) was derived from the ICF and designed to capture the specific situation of the developing child. As ASD affects individuals throughout the life span, and the ICF-CY includes all ICF categories, the ICF-CY will be used in this project ("ICF(-CY)" from now on). The ICF(-CY) categories to be included in the ICF Core Sets for ASD will be determined at an ICF Core Set Consensus Conference, where evidence from four preparatory studies (a systematic review, an expert survey, a patient and caregiver qualitative study, and a clinical cross-sectional study) will be integrated. Comprehensive and Brief ICF Core Sets for ASD will be developed with the goal of providing useful standards for research and clinical practice and generating a common language for functioning and impairment in ASD in different areas of life and across the life span.
This process can be seen as part of a larger effort towards the system-wide implementation of the ICF in routine clinical and rehabilitation practice to allow for the regular and comprehensive evaluation of health outcomes most relevant for the monitoring of quality of care.
This is the third in a series of four cross-cultural empirical studies designed to develop International Classification of Functioning, Disability and Health (ICF, and Children and Youth version, ICF(-CY) Core Sets for Attention-Deficit Hyperactivity Disorder (ADHD). To explore the perspectives of individuals diagnosed with ADHD, self-advocates, immediate family members and professional caregivers on relevant areas of impairment and functional abilities typical for ADHD across the lifespan as operationalized by the ICF(-CY). A qualitative study using focus group discussions or semi-structured interviews of 76 participants, divided into 16 stakeholder groups. Participants from five countries (Brazil, India, Saudi Arabia, South Africa and Sweden) were included. A deductive qualitative content analysis was conducted to extract meaningful functioning and disability concepts from verbatim material. Extracted concepts were then linked to ICF(-CY) categories by independent researchers using a standardized linking procedure. In total, 82 ICF(-CY) categories were identified, of which 32 were related to activities and participation, 25 to environmental factors, 23 to body functions and 2 to body structures. Participants also provided opinions on experienced positive sides to ADHD. A high level of energy and drive, creativity, hyper-focus, agreeableness, empathy, and willingness to assist others were the most consistently reported strengths associated with ADHD. Stakeholder perspectives highlighted the need to appraise ADHD in a broader context, extending beyond diagnostic criteria into many areas of ability and disability as well as environmental facilitators and barriers. This qualitative study, along with three other studies (comprehensive scoping review, expert survey and clinical study), will provide the scientific basis to define ICF(-CY) Core Sets for ADHD, from which assessment tools can be derived for use in clinical and research setting, as well as in health care administration.Electronic supplementary materialThe online version of this article (doi:10.1007/s00787-017-0983-1) contains supplementary material, which is available to authorized users.
The consensus conference led to the integration of evidence and expert opinion based on the ICF. The adoption of the ICF Core Sets for TBI provides a basic international standard for the multidisciplinary assessment of a TBI patient's functioning.
The joint use of the ICD and the ICF through the list of functioning properties and in the context of ICD-11 development captures the valuable synergy of the two classifications. It enhances patient management, intervention design and the reporting of health. It also enables us to distinguish severity of disease from its impacts. The ICD-ICF joint use creates a shared formal representation across the continuum of care for health information system implementation.
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