Psychometric properties of the Young Children's Participation and Environment Measure.

OBJECTIVE: To evaluate the psychometric properties of the newly developed Young Children's Participation and Environment Measure (YC-PEM). DESIGN: Cross-sectional study. SETTING: Data were collected online and by telephone. PARTICIPANTS: Convenience and snowball sampling methods were used to survey caregivers of children (N=395, comprising children with [n=93] and without [n=302] developmental disabilities and delays) between the ages of 0 and 5 years (mean age±SD, 35.33±20.29 mo) and residing in North America. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The YC-PEM includes 3 participation scales and 1 environment scale. Each scale is assessed across 3 settings: home, daycare/preschool, and community. Data were analyzed to derive estimates of internal consistency, test-retest reliability, and construct validity. RESULTS: Internal consistency ranged from .68 to .96 and .92 to .96 for the participation and environment scales, respectively. Test-retest reliability (2-4 wk) ranged from .31 to .93 for participation scales and from .91 to .94 for the environment scale. One of 3 participation scales and the environment scale demonstrated significant group differences by disability status across all 3 settings, and all 4 scales discriminated between disability groups for the daycare/preschool setting. The participation scales exhibited small to moderate positive associations with functional performance scores. CONCLUSIONS: Results lend initial support for the use of the YC-PEM in research to assess the participation of young children with disabilities and delays in terms of (1) home, daycare/preschool, and community participation patterns; (2) perceived environmental supports and barriers to participation; and (3) activity-specific parent strategies to promote participation.

Applying the ICF-CY framework to examine biological and environmental factors in early childhood development.

BACKGROUND/PURPOSE: Previous cohort studies for the general pediatric population had a limited focus on either environmental or biological influences, or a specific theoretical framework. The child's development, however, is a composite of physical, mental, social, environmental, and personal factors. The framework of the International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY) provides a comprehensive model for investigating the influential factors of child development within a biopsychosocial perspective. METHODS: A birth cohort study followed up 122 child-parent dyads at birth and when the children were 4 months, 6 months, and 2.5 years old. Structural equation modeling was conducted based on the concept and the definitions of ICF-CY. RESULTS: The path coefficients linking exposures and outcome variables were significant except for the paths from birth weight to general development of infants and toddlers. Home environment explained 59% of variance of infant developmental outcomes. CONCLUSION: The proposed model based on ICF-CY showed acceptable fit to the data and provides support for the importance of the home environment on general development of infants and toddlers.

Defining childhood disability: ICF-CY developmental code sets.

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.

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 prevalencescreening and assessment toolsdocumenting intervention goals and outcomes.

Comparing children's self-report instruments for health-related quality of life using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY).

UNLABELLED: Children with chronic conditions often experience a long treatment which can be complex and negatively impacts the child's well-being. In planning treatment and interventions for children with chronic conditions, it is important to measure health-related quality of life (HrQoL). HrQoL instruments are considered to be a patient-reported outcome measure (PROM) and should be used in routine practice. PURPOSE: The aim of this study was to compare the content dimensions of HrQoL instruments for children's self-reports using the framework of ICF-CY. METHOD: The sample consist of six instruments for health-related quality of life for children 5 to 18 years of age, which was used in the Swedish national quality registries for children and adolescents with chronic conditions. The following instruments were included: CHQ-CF, DCGM-37, EQ-5D-Y, KIDSCREEN-52, Kid-KINDL and PedsQL 4.0. The framework of the ICF-CY was used as the basis for the comparison. RESULTS: There were 290 meaningful concepts identified and linked to 88 categories in the classification ICF-CY with 29 categories of the component body functions, 48 categories of the component activities and participation and 11 categories of the component environmental factors. No concept were linked to the component body structures. The comparison revealed that the items in the HrQoL instruments corresponded primarily with the domains of activities and less with environmental factors. CONCLUSIONS: In conclusion, the results confirm that ICF-CY provide a good framework for content comparisons that evaluate similarities and differences to ICF-CY categories. The results of this study revealed the need for greater consensus of content across different HrQoL instruments. To obtain a detailed description of children's HrQoL, DCGM-37 and KIDSCREEN-52 may be appropriate instruments to use that can increase the understanding of young patients' needs.

Communication, disability, and the ICF-CY.

The child's interactions with persons in the proximal environment constitute the context for development of communication. Within early close relationships, the child acquires communication skills; developmental outcomes are defined by the continuous dynamic interactions of the child, the experiences provided by the family and close environment, and the use of different means of augmentative and alternative communication (AAC). Communication problems manifest in a variety of ways and at different levels of severity. The nature of problems differs as a function of the child's age and diagnosed condition, the communication skills of interaction partners, and the availability of communication aids. The focus for assessment and intervention may be the child, the family, the close environment and/or the interactions between them. Clarifying these varied functions and environmental factors is crucial for appropriate assessment and provision of augmentative and alternative communication (AAC) interventions. This paper reviews issues in assessment and intervention for children in need of AAC and presents the World Health Organizations' (WHO) International Classification of Functioning, Disability and Health version for Children and Youth (ICF-CY) as a tool to enhance assessment and intervention in the AAC field.

Developing the ICF-CY for AAC profile and code set for children who rely on AAC.

We describe the ICF-CY for AAC Profile, a tool to integrate information about the multiple factors affecting communication skill development and use in school-aged children with complex communication needs. The Profile uses the World Health Organization's International Classification of Functioning, Disability and Health - Children & Youth Version ( WHO, 2007 ) as its framework. We propose that the ICF-CY for AAC Profile constitutes a code set for AAC users and discuss the iterative process of code-set development. The Profile is one component of a proposed process to guide the development of educational goals for children in Grades kindergarten-12 who currently or potentially rely on AAC.

Promoting Developmental Potential in Early Childhood: A Global Framework for Health and Education.

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 synthesizes 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.

Associated Factors of Self-injury Among Adolescents with Autism Spectrum Disorder in a Community and Residential Treatment Setting.

Self-injurious behavior (SIB) occurs in up to 50% of individuals with autism. As one of the most serious conditions in individuals with developmental disabilities, SIB affects the individual and his or her family in multiple contexts. A systematic analysis of factors most commonly associated with SIB could inform the development of individualized intervention strategies. The current study examined factors related to SIB in an analysis of client records of 145 children with autism in a comprehensive care center. Predictor variables included age, gender, the Adaptive Behavior Composite, sensory processing, aggression, stereotypies, irritability, adaptive skills, and medical conditions. Age, irritability, and the Adaptive Behavior Composite were found to significantly predict SIB.

Structural Validity of an ICF-Based Measure of Activity and Participation for Children in Taiwan's Disability Eligibility Determination System.

To assess activity and participation for children in Taiwan's Disability Eligibility Determination System (DEDS), we developed a questionnaire, the Functioning Disability Evaluation Scale (FUNDES-Child), based on the Child and Adolescent Scale of Participation (CASP). The study follows a methodology research design to investigate the construct validity of the frequency and independence dimensions of FUNDES-Child 7.0. Two samples were randomly stratified from the databank of 13,835 children and youth with disabilities aged 6.0-17.9 years to examine structural validity by exploratory factor analysis (EFA, n = 4111, mean age of 11.3 ± 3.5) and confirmatory factor analysis (CFA, n = 4823, mean age of 11.4 ± 3.5)). EFA indicated a 4-factor structure for the frequency dimension (51.3% variance explained) and a 2-factor structure for the independence dimension (53.6% variance explained). The CFA indicated that the second-order factor structures of both dimensions were more parsimonious with adequate fit indices (Goodness fit Index, GFI; Normed Fit Index, NFI; Comparative Fit Index, CFI; and Tucker-Lewis Index, TLI ≥ 0.95, Root Mean Square Error of Approximation, RMSEA < 0.06). Results provide evidence that the participation part of FUNDES-Child 7.0 has acceptable structural validity for use in Taiwan's DEDS. Utility of FUNDES-Child 7.0 in rehabilitation, welfare, and educational services needs further study.

Classifying functional manifestations of ectodermal dysplasias.

Ectodermal dysplasias (ED) encompass more than 200 conditions involving some combination of disorders of hair, nails, teeth, and sweat glands. The incidence of ED is relatively rare affecting about 7 of 10,000 births [Itin and Fistarol (2004)]. Individuals manifesting ED present with a wide range of disorders involving hair, nails, teeth, and sweat glands and in many cases other characteristics as well. The complex nature of the disorder has presented challenges for clinical practice and required the involvement of multiple approaches and disciplines. It has also resulted in significant research initiatives on cause and symptomatology. A significant challenge has been the search for comprehensive documentation of the varied and complex manifestations associated with ED. Existing classification systems of ED have focused on physiological and structural dimensions. Classification approaches with a broader focus including characteristics of functioning in persons with ED could facilitate clinical work and research initiatives. In this context, the potential utility of available classifications that address functioning and disability would be appropriate to consider in the search for a consensus classification of ED. To that end, the purpose of this article is to (a) review the status of classification of ED, (b) provide a brief overview of the International Classification of Functioning, Disability and Health-Children and Youth, ICF-CY [World Health Organization (2007); International Classification of Functioning, Disability and Health-Children and Youth. Geneva: WHO.], and (c) identify possible contributions of the ICF-CY to classification of ED's.

Constructing and testing a disability index in a US sample of preschoolers with disabilities.

PURPOSE: To develop and test an index of disability severity in a heterogeneous population of preschoolers with disabilities. METHOD: Using a nationally representative sample of 3,104 children receiving special education services in the US, questions from a parent interview were used to develop an index of disability severity consisting of domains of functioning defined by gradients of severity. Regressions were used to examine the association between 15 functional domains and 8 cognitive, social/behavioural, and functional outcomes. Full and abbreviated versions of this disability index were compared. Correlations with proxy measures of disability in this population were used to establish concurrent validity, and the predictive ability of this measure was compared with that of the federally defined disability categories. RESULTS: Of the 15 domains examined, most were significant predictors of at least two outcomes. A shortened index of only six variables was found to be as effective as the longer version in characterising children's level of severity. The index was significantly correlated with intervention variables such as the age at which children began receiving special education or therapy service, r(2802) = -0.22, p

The Burn Model Systems outcome measures: a content analysis using the International Classification of Functioning, Disability, and Health.

BACKGROUND: The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Burn Injury Model Systems (BMS) is a nationwide database that uses patient-reported outcome measures to collect data. Though the outcome measures demonstrate good psychometric properties, the question remains whether or not these measures collect data that encompass the entire experience of burn patients over time. METHODS: Each meaningful concept included in the BMS assessments was linked to the International Classification of Functioning, Disability and Health (ICF) in order to classify and describe the content of each measure. The linking was completed by two experienced coders. The perspective of each assessment was also determined. RESULTS: The body function component was most frequently addressed overall followed by the activities and participation component. The component body structures and environmental factors are not extensively covered in the BMS assessments. ICF chapter and category distribution varied greatly between assessments. The assessments were of the health status perspective. CONCLUSION: This study suggests a need to revisit the item composition of the BMS assessments to more evenly distribute ICF topics and subtopics that are pertinent to burn injury which will ensure a broader but more precise understanding of burn injury recovery. Implications for Rehabilitation A better understanding of the data collected through the Burn Model Systems (BMS) project may contribute to improve data collection tools and ultimately lead to clinical practice innovations and improvements. Clinicians interested in using BMS data for research purposes can better understand what topics are included and excluded in the collection and what perspectives are addressed. This study highlights the need for burn clinicians around the world to lend their expertise to the WHO for the development of a much needed burn injury International Classification of Functioning, Disability and Health Core Set.

ICF and ICD codes provide a standard language of disability in young children.

BACKGROUND AND OBJECTIVES: The aim of this study was to examine the utility of a hierarchical algorithm incorporating codes from the International Classification of Functioning, Disability and Health--ICF (WHO, 2001) and the International Statistical Classification of Diseases-ICD (WHO, 1994) to classify reasons for eligibility of young children in early intervention. METHODS: The database for this study was a nationally representative enrollment sample of more than 5,500 children in a longitudinal study of early intervention. Reasons for eligibility were reviewed and matched to the closest ICF or ICD codes under one of four major categories (Body Functions/Structures, Activities/Participation, Health Conditions, and Environmental Factors). RESULTS: The average number of reasons for eligibility provided per child was 1.5, resulting in a population summary exceeding 100%. A total of 305 ICF and ICD codes were used with most (77%) of the children having codes in the category of Body Function/Structures. Forty-one percent of the sample had codes of Health Conditions, whereas the proportions with codes in the Activities/Partipication and Environmental Categories were 10 and 5%, respectively. CONCLUSIONS: The results demonstrate that ICD and ICF can be jointly used as a common language to document disability characteristics of children in early intervention.

Child characteristics, caregiver characteristics, and environmental factors affecting the quality of life of caregivers of children with cerebral palsy.

PURPOSE: The study aimed to investigate comprehensively the determinants of the quality of life (QOL) of caregivers of children with cerebral palsy (CP) based on the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY). METHODS: A total of 167 children with CP (mean age 9.06 years, SD 2.61 years) and their caregivers (mean age 40.24 years, SD 5.43 years) participated in this study. The QOL of caregivers was measured with the World Health Organization Quality of Life-BREF-Taiwan version (WHOQOL-BREF-TW). The potential determinants of QOL were collected, including child characteristics, caregiver characteristics, and environmental factors from all dimensions of the ICF-CY and analysed using multiple regression models. RESULTS: Four multiple regression models revealed that determinants of the QOL of caregivers of children with CP was multidimensional, encompassing child characteristics (age, type of CP, fine motor impairment, other diseases, behaviour and emotions, visual impairment, hearing impairment), caregiver characteristics (general mental health, parenting stress, marital status, family coping patterns, and socio-economic status), and environmental factors (child's medication, school setting, and current rehabilitation service, caregiver's spouse's age, family life impacts, and domestic helper). CONCLUSIONS: Knowledge of the determinants of QOL could serve as a guide in a holistic approach to evaluation and intervention and help plan interventions targeted at these determinants to improve the QOL of caregivers of children with CP. Implications for Rehabilitation Caregivers of children with CP had lower QOL, except the environment QOL. The QOL determinants of caregivers of children with CP are multidimensional, including child characteristics, caregiver characteristics, and environmental factors. In addition to child characteristics of severity of fine motor impairments and emotional and behavioural problems, caregiver characteristics of general mental health, parenting stress, and coping patterns, and environmental factors of family life impacts, and school setting demonstrated important relationships with caregiver QOL.

The Communication Supports Inventory-Children & Youth (CSI-CY), a new instrument based on the ICF-CY.

PURPOSE: Two studies are presented that evaluated the Communication Supports Inventory-Children & Youth (CSI-CY), an instrument designed to facilitate the development of communication-related educational goals for students with complex communication needs (CCN). The CSI-CY incorporates a code set based on the ICF-CY. The studies were designed to determine the effect of using the CSI-CY on IEP goals for students with CCN and to evaluate consumer satisfaction. METHOD: In Study 1, sixty-one educators and speech-language pathologists were randomly assigned to either (a) provide a student's current IEP (control group) or (b) complete the CSI-CY prior to preparing a student's next IEP and to submit the new IEP (experimental group). Study 2 was a field test to generate consumer satisfaction data. RESULTS: Study 1 showed that IEP goals submitted by participants in the experimental group referenced CSI-CY-related content significantly more frequently than did those submitted by control participants. Study 2 revealed high satisfaction with the instrument. CONCLUSIONS: The code set basis of the CSI-CY extends the common language of the ICF-CY to practical educational use for children with CCN across diagnostic groups. The CSI-CY is well regarded as an instrument to inform the content of communication goals related to CCN. Implications for Rehabilitation The CSI-CY will guide rehabilitation professionals to develop goals for children with complex communication impairments. The CSI-CY is a new instrument that is based on the ICF-CY for documentation of communication goals.

The multicenter benchmarking study of burn injury: A content analysis of the outcome measures using the international classification of functioning, disability and health.

OBJECTIVE: To link, classify and describe the content of the Multicenter Benchmarking Study Burn Outcomes Questionnaires (BOQ) using the International Classification of Functioning, Disability and Health (ICF) to determine if the information garnered provides researchers with the data necessary to develop a comprehensive understanding of life after burns. METHODS: Two ICF linking experts used a standardized linking technique endorsed by the World Health Organization to link all BOQ concepts to the ICF. Linking results were analyzed to determine the comprehensiveness of each of the five measures. RESULTS: The activities and participation component was most frequently addressed followed by the body functions component. Environmental factors are not extensively covered and body structures are not addressed. ICF chapter and category distribution were skewed and varied between assessments. The majority of BOQ items are of the health status perspective. CONCLUSION: BOQ item composition could be improved with a more even distribution of pertinent ICF topics. Assessment authors may consider addressing the impact of environmental factors on participation. Including body structure concepts would allow investigators to track structural deformation and/or developmental delay. Generally speaking, this data should not be used to examine quality of life outcomes.

Diagnosis to function: classification for children and youths.

This article provides an overview of a newly approved World Health Organization framework and classification system for human functioning. The International Classification of Functioning, Disability, and Health (ICF) identifies dimensions of human functioning and describes a common language for clinical practice, research, and policy development across disciplines and service systems. This presentation highlights the development of a version of the ICF for children and youths (ICF-CY) and its potential utility in developmental and behavioral pediatrics. Clinical, research, and policy dimensions are described. Limitations related to scope and clarity of the framework are also outlined. The article proposes that serious consideration be given the ICF-CY as an integrated system to clarify constructs, improve communication, and encourage coordination of health services for children and youths.

ICF-CY code set for infants with early delay and disabilities (EDD Code Set) for interdisciplinary assessment: a global experts survey.

PURPOSE: Comprehensive description of functioning is important in providing early intervention services for infants with developmental delay/disabilities (DD). A code set of the International Classification of Functioning, Disability and Health: Children and Youth Version (ICF-CY) could facilitate the practical use of the ICF-CY in team evaluation. The purpose of this study was to derive an ICF-CY code set for infants under three years of age with early delay and disabilities (EDD Code Set) for initial team evaluation. METHODS: The EDD Code Set based on the ICF-CY was developed on the basis of a Delphi survey of international professionals experienced in implementing the ICF-CY and professionals in early intervention service system in Taiwan. RESULTS: Twenty-five professionals completed the Delphi survey. A total of 82 ICF-CY second-level categories were identified for the EDD Code Set, including 28 categories from the domain Activities and Participation, 29 from body functions, 10 from body structures and 15 from environmental factors. CONCLUSIONS: The EDD Code Set of 82 ICF-CY categories could be useful in multidisciplinary team evaluations to describe functioning of infants younger than three years of age with DD, in a holistic manner. Future validation of the EDD Code Set and examination of its clinical utility are needed. IMPLICATIONS FOR REHABILITATION: The EDD Code Set with 82 essential ICF-CY categories could be useful in the initial team evaluation as a common language to describe functioning of infants less than three years of age with developmental delay/disabilities, with a more holistic view. The EDD Code Set including essential categories in activities and participation, body functions, body structures and environmental factors could be used to create a functional profile for each infant with special needs and to clarify the interaction of child and environment accounting for the child's functioning.

The Chinese version of the Child and Adolescent Scale of Environment (CASE-C): validity and reliability for children with disabilities in Taiwan.

Measurement of children's participation and environmental factors is a key component of the assessment in the new Disability Evaluation System (DES) in Taiwan. The Child and Adolescent Scale of Environment (CASE) was translated into Traditional Chinese (CASE-C) and used for assessing environmental factors affecting the participation of children and youth with disabilities in the DES. The aim of this study was to validate the CASE-C. Participants were 614 children and youth aged 6.0-17.9 years with disabilities, with the largest condition group comprised of children with intellectual disability (61%). Internal structure, internal consistency, test-retest reliability, convergent validity, and discriminant (known group) validity were examined using exploratory factor analyses, Cronbach's α coefficient, intra-class correlation coefficients (ICC), correlation analyses, and univariate ANOVAs. A three-factor structure (Family/Community Resources, Assistance/Attitude Supports, and Physical Design Access) of the CASE-C was produced with 38% variance explained. The CASE-C had adequate internal consistency (Cronbach's α=.74-.86) and test-retest reliability (ICCs=.73-.90). Children and youth with disabilities who had higher levels of severity of impairment encountered more environmental barriers and those experiencing more environmental problems also had greater restrictions in participation. The CASE-C scores were found to distinguish children on the basis of disability condition and impairment severity, but not on the basis of age or sex. The CASE-C is valid for assessing environmental problems experienced by children and youth with disabilities in Taiwan.

Participation of Children with Disabilities in Taiwan: The Gap between Independence and Frequency.

BACKGROUND: Independence and frequency are two distinct dimensions of participation in daily life. The gap between independence and frequency may reflect the role of the environment on participation, but this distinction has not been fully explored. METHODS: A total of 18,119 parents or primary caregivers of children with disabilities aged 6.0-17.9 years were interviewed in a cross-sectional nationwide survey with the Functioning Scale of the Disability Evaluation System - Child version (FUNDES-Child). A section consisting of 20 items measured the children's daily participation in 4 environmental settings: home, neighborhood/community, school, and home/community. Higher independence and frequency restriction scores indicated greater limitation of participation in daily activities. Scores for independence, frequency and independence-frequency gaps were examined across ages along with trend analysis. ANOVA was used to compare the gaps across settings and diagnoses for children with mild levels of severity of impairment. FINDINGS: A negative independence-frequency gap (restriction of frequency was greater than that of independence) was found for children with mild to severe levels of impairment. A positive gap (restriction of independence was greater than that of frequency) was found for children with profound levels of severity. The gaps became wider with age in most settings of children with mild impairment and different diagnoses. Widest negative gaps were found for the neighborhood/community settings than for the other three settings for children with mild to severe impairment. CONCLUSIONS: Children's participation and independence-frequency gaps depend not only on the severity of their impairments or diagnoses, but also on their age, the setting and the support provided by their environment. In Taiwan, more frequency restrictions than ability restrictions were found for children with mild to moderate severity, especially in the neighborhood/community setting, and increased with age. Further identification of environmental opportunities that positively impact frequency of participation is needed.