Wendy J. Coster

Measuring participation of children with disabilities: Issues and challenges

Purpose. The aim of this paper is to examine conceptual issues that challenge development of valid and useful measures of childrens participation. Method. Ambiguities in the current definition of participation in the International Classification of Functioning, Disability and Health (ICF) are examined along with their implications for developing valid measures for children and youth. Results. Developers of new measures must address three key issues that will affect the ultimate meaning of participation data obtained from these instruments: uncertain criteria to distinguish activity from participation; lack of consensus on whether measures should address objective or subjective aspects of participation or both; and appropriate choice of respondent when children are the focus. Variations in how the participation construct is operationalized challenge ones ability to develop a coherent body of knowledge about childrens participation and the factors that influence it. Conclusion. Given current variations in how participation is being defined, both developers and users of measures of participation need to be explicit about the definition of participation that a particular measure represents and the inferences that can be drawn from the scores.

Promotion of Physical Fitness and Prevention of Secondary Conditions for Children With Cerebral Palsy: Section on Pediatrics Research Summit Proceedings

Inadequate physical fitness is a major problem affecting the function and health of children with cerebral palsy (CP). Lack of optimal physical activity may contribute to the development of secondary conditions associated with CP such as chronic pain, fatigue, and osteoporosis. The purpose of this article is to highlight the content and recommendations of a Pediatrics Research Summit developed to foster collaborative research in this area. Two components of physical fitness—muscle strength and cardiorespiratory fitness—were emphasized. Although there is evidence to support the use of physical fitness interventions, there are many gaps in our current knowledge. Additional research of higher quality and rigor is needed in order to make definitive recommendations regarding the mode, intensity, frequency, and duration of exercise. Outcome measurements have focused on the body functions and structures level of the International Classification of Functioning, Disability and Health (ICF), and much less is known about effects at the activities and participation levels. Additionally, the influence of nutritional and growth factors on physical fitness has not been studied in this population, in which poor growth and skeletal fragility have been identified as serious health issues. Current intervention protocols and outcome measurements were critically evaluated, and recommendations were made for future research.

Activity outcome measurement for postacute care.

BackgroundEfforts to evaluate the effectiveness of a broad range of postacute care services have been hindered by the lack of conceptually sound and comprehensive measures of outcomes. It is critical to determine a common underlying structure before employing current methods of item equating across outcome instruments for future item banking and computer-adaptive testing applications. ObjectiveTo investigate the factor structure, reliability, and scale properties of items underlying the Activity domains of the International Classification of Functioning, Disability and Health (ICF) for use in postacute care outcome measurement. MethodsWe developed a 41-item Activity Measure for Postacute Care (AM-PAC) that assessed an individual’s execution of discrete daily tasks in his or her own environment across major content domains as defined by the ICF. We evaluated the reliability and discriminant validity of the prototype AM-PAC in 477 individuals in active rehabilitation programs across 4 rehabilitation settings using factor analyses, tests of item scaling, internal consistency reliability analyses, Rasch item response theory modeling, residual component analysis, and modified parallel analysis. ResultsResults from an initial exploratory factor analysis produced 3 distinct, interpretable factors that accounted for 72% of the variance:Applied Cognition (44%), Personal Care & Instrumental Activities (19%), and Physical & Movement Activities (9%); these 3 activity factors were verified by a confirmatory factor analysis. Scaling assumptions were met for each factor in the total sample and across diagnostic groups. Internal consistency reliability was high for the total sample (Cronbach &agr; = 0.92 to 0.94), and for specific diagnostic groups (Cronbach &agr; = 0.90 to 0.95). Rasch scaling, residual factor, differential item functioning, and modified parallel analyses supported the unidimensionality and goodness of fit of each unique activity domain. ConclusionsThis 3-factor model of the AM-PAC can form the conceptual basis for common-item equating and computer-adaptive applications, leading to a comprehensive system of outcome instruments for postacute care settings.

A Content Validity Study of the Pediatric Evaluation of Disability Inventory

The Pediatric Evaluation of Disability (PEDI) was developed as a comprehensive functional assessment instrument for pediatric rehabilitation. The PEDI samples content in the domains of self-care, mobility, toileting, and social cognition. These content domains are evaluated by three separate scales: 1) functional skills/behaviors, 2) caregiver assistance of complex activities, and 3) environmental modifications and equipment. The PEDI can be used as a parent report/structured interview instrument or by professionals observing the childs functional behavior in a hospital, outpatient, or educational setting. This article describes the development edition (pilot) of the PEDI and includes a report of a content validity study with 31 expert reviewers. Overall, the content validity and feasibility of the PEDI were supported. Revisions made in the standardization version of the PEDI based on the content validity study are discussed.

Participation and activity performance of students with cerebral palsy within the school environment.

Purpose. The aims of this study were to investigate the levels of participation and activity performance of students with cerebral palsy within the inclusive school context, to explore the relationships between these two aspects of function and to identify predictors of participation among the various school activities. Method. Two hundred and forty-eight elementary school students were divided into three groups: 100 fully included (FI) students with CP, 100 matched by class and gender typical students (TS) and 48 students with CP in self-contained classes (SC). The School Function Assessment (SFA) was used as the main measurement for assessing the levels of participation and functional performance profiles. Results. Significant differences (P < 0.0001) in levels of participation were evident across the three study groups using MANOVA and ANOVAs analyses, where the TS level was the highest and the SC was the lowest. Comparison of the mean score of the physical and the cognitive/behavioural tasks performance revealed similar results among the three groups. Positive Pearson correlations were obtained between participation and both motor and cognitive/behavioural activity performance in the FI and the SC groups. Regression models for the FI and the SC groups were found significant (P < 0.0001) and explained above 69% of the participation variance with physical activity performance as the most predictive variable. Conclusions. Significant differences exist between participation and activity performance of typical students and students with CP included in regular schools. Moreover, activity performance limitations were found to impact on school participation. These findings stress the continuing need to provide rehabilitative intervention towards removing existing barriers within the inclusive environment.

Psychometric evaluation of the Participation and Environment Measure for Children and Youth.

Aim  The aim of this study was to examine the psychometric properties (reliability and validity) of the Participation and Environment Measure for Children and Youth (PEM‐CY).

Development of the participation and environment measure for children and youth: conceptual basis

Purpose: The purpose of this paper is to describe the conceptual foundation of a new parent-report measure of the participation and environment of children and youth: the Participation and Environment Measure − Children and Youth version (PEM-CY). Methods: The ICF-CY provided an initial conceptual framework. Results from a qualitative study to obtain parent perspectives and in-depth review of the literature were used to identify relevant dimensions, items and rating scales for measurement. Results: Life situations, defined as sets of activity categories, were identified for three settings: home, school and community. Participation was operationalized as a multidimensional construct with three measurement dimensions: frequency, extent of involvement and desire for change. Parallel sets of items examining environmental factors that are perceived to help or facilitate participation were defined in relation to the typical activities of each setting. Conclusions: The PEM-CY provides a new measure of participation and environment that reflects the perspectives of parents of children and youth. The instrument will facilitate research and professional practice to understand and support the participation of children and youth with and without disabilities. Implications for Rehabilitation As defined by the International Classification of Functioning, Disability, and Health (ICF), participation and environment are multidimensional constructs that have been challenging to measure. A new parent-report survey measure has been developed that is feasible for use in large-scale studies of children and youth with and without disabilities. The instrument examines participation and environment of children and youth aged 5 to 17 years across three major settings: home, school and community.

Neuroimpairments, activity performance, and participation in children with cerebral palsy mainstreamed in elementary schools

Participation and activity performance (motor and cognitive or behavioural) were examined in 148 children with cerebral palsy (CP; 87 males, 61 females; mean age 9y 8mo, SD 1y 11mo; range 6y 1mo to 13y 7mo), mainstreamed in fully inclusive (n=100) and in self-contained classes (n=48) within general schools in Israel, using the School Function Assessment. Differences in participation within these groups were analyzed in relation to the type of CP (mainly spastic hemiplegia, spastic diplegia, and spastic tetraplegia), the level of impairment according to the Gross Motor Function Classification System (GMFCS; level II 55%, level III 37%, and level IV 8%), and additional neuroimpairments. Univariate analyses of variance revealed significant differences in levels of participation and levels of activity performance between different types of CP and GMFCS levels. With regard to additional neuroimpairments, significant differences in participation were found for fully included children with speech and language impairments and those with learning disability within the self-contained group. Physical activity performance partly accounted for differences in participation between children with different types of CP and different levels of motor impairment. These findings suggest that within the mainstreamed environment, participation and activity performance increase as motor disability and/or additional neuroimpairments (speech and language impairments and learning disability) decrease.

Computerized Adaptive Testing for Follow-Up After Discharge From Inpatient Rehabilitation: II. Participation Outcomes

OBJECTIVES To measure participation outcomes with a computerized adaptive test (CAT) and compare CAT and traditional fixed-length surveys in terms of score agreement, respondent burden, discriminant validity, and responsiveness. DESIGN Longitudinal, prospective cohort study of patients interviewed approximately 2 weeks after discharge from inpatient rehabilitation and 3 months later. SETTING Follow-up interviews conducted in patients home setting. PARTICIPANTS Adults (N=94) with diagnoses of neurologic, orthopedic, or medically complex conditions. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES Participation domains of mobility, domestic life, and community, social, & civic life, measured using a CAT version of the Participation Measure for Postacute Care (PM-PAC-CAT) and a 53-item fixed-length survey (PM-PAC-53). RESULTS The PM-PAC-CAT showed substantial agreement with PM-PAC-53 scores (intraclass correlation coefficient, model 3,1, .71-.81). On average, the PM-PAC-CAT was completed in 42% of the time and with only 48% of the items as compared with the PM-PAC-53. Both formats discriminated across functional severity groups. The PM-PAC-CAT had modest reductions in sensitivity and responsiveness to patient-reported change over a 3-month interval as compared with the PM-PAC-53. CONCLUSIONS Although continued evaluation is warranted, accurate estimates of participation status and responsiveness to change for group-level analyses can be obtained from CAT administrations, with a sizeable reduction in respondent burden.

Predicting elementary school participation in children with disabilities

OBJECTIVE To identify predictors of participation in school activities from two sets of functional variables using classification and regression tree analysis. DESIGN Relational study. PARTICIPANTS A nationwide sample of 341 children with various disabling conditions, including physical and cognitive/behavioral types of impairment and various severity levels. Children attended public elementary school in 40 states in the United States. MAIN OUTCOME MEASURE Overall participation in elementary school, combining childrens participation in six different environments (transportation, transitions, classroom, cafeteria, bathroom, and playground), as measured by the newly developed School Function Assessment. The children were dichotomized into full (n = 117) and limited (n = 224) participation categories. RESULTS Two classification trees were developed identifying a small set of predictors from variables measuring performance of functional tasks and discrete activities. Final predictive models included physical and cognitive-behavioral variables, suggested important interactions among predictors, and identified meaningful cut-off points that classified the sample into the outcome categories with about 85% accuracy. CONCLUSIONS Limited participation was predicted by information about childrens physical capabilities. Full participation was predicted by a combination of physical and cognitive-behavioral variables. Findings underscore the relative utility of functional performance compared with impairment information to predict the outcome, and suggest pathways of influence to consider in future research and intervention efforts.