RESUMO
In 2022, an international conference was held focusing on 'participation'. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality.
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Comunicação , Comportamento Social , HumanosRESUMO
AIM: To investigate associations between participation-related constructs and participation frequency and involvement in inclusive schools. METHOD: In this cross-sectional study, teachers of children with additional support needs, including intellectual disability, autism, and learning difficulties, completed measures. Participation-related constructs were measured using the School Participation Questionnaire; participation frequency and involvement were measured using the Participation and Environment Measure for Children and Youth. A series of multilevel linear mixed-effects regression models with maximum likelihood estimates and bootstrap confidence intervals with p-values were obtained. Final models included participation-related constructs and participation, controlling for demographic and diagnostic confounders (including age, sex, language, level of school support, and autism). RESULTS: Six hundred and eighty-eight children (448 [65.1%] males; mean age 8 years 7 months [range 4 years 10 months-12 years 13 months, standard deviation 2 years 1 months]) were assessed by 252 teachers. Across a series of models, participation-related constructs were consistently associated with more intensive participation (competence, environment, identity p < 0.001; symptoms p = 0.007), independent of confounders. More frequent participation remained associated with three of four participation-related constructs (competence, identity p < 0.001; environment p = 0.021). Age (p = 0.046), language (p = 0.002), and level of school support (p = 0.039) also remained significantly associated with frequency of participation. INTERPRETATION: Children with additional support needs in inclusive schools may have several participation barriers. Policies and interventions to improve participation are needed. WHAT THIS PAPER ADDS: Across a series of models, participation-related constructs were associated with frequency and intensity of participation. Only participation-related constructs were associated with participation intensity. Demographic and diagnostic variables were associated with frequency, not intensity, of participation. Teacher assessment is valid for assessment of participation and participation-related constructs.
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Deficiência Intelectual , Instituições Acadêmicas , Masculino , Adolescente , Humanos , Criança , Lactente , Feminino , Estudos Transversais , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Roughly 40% of those with intellectual/developmental disabilities (IDD) have mental health needs, twice the national average. Unfortunately, outpatient mental health services are often inaccessible, increasing reliance on hospital-based services. While telemental health services hold potential to address this gap, little is known about the effectiveness of telemental health for the diversity of persons with IDD, especially as it relates to crisis prevention and intervention services. Accordingly, the aims of this study are to: (1) compare telemental health versus in-person crisis prevention and intervention services among people with IDD; and (2) understand if outcomes vary across subpopulations, in order to identify potential disparities. METHODS: This study will take place within START (Systemic, Therapeutic, Assessment, Resources, and Treatment), a national evidence-based model of mental health crisis prevention and intervention for people with IDD. A total of 500 youth and adults, located across nine states, will be randomized 1:1 to telemental health vs. in-person. Participant inclusion criteria are ages 12-45 years, living in a family setting, and newly enrolled (within 90 days) to START. Outcomes will be assessed, using a non-inferiority design, for up to 1 year or until discharge. The intervention is comprised of four components: (1) outreach; (2) consultation/coping skills; (3) intake/assessment; and, (4) 24-hour crisis response. The in-person condition will deliver all components in-person. The telemental health condition will deliver components 1 & 2, via telephonic or other communication technology, and components 3 & 4 in-person. Outcomes include mental health crisis contacts, mental health symptoms, emergency psychiatric service use, perceived quality of mental healthcare, and time to discharge. DISCUSSION: To our knowledge, this will be the first trial of a telemental health crisis program for the IDD population. The study will be executed by an interdisciplinary team of experts that includes persons with lived experience of disability. Understanding the benefits of specific telemental health methods has important implications to the design of interventions. This telemental health study offers promise to address disparities in access to mental health care for people with IDD across diverse racial, ethnic, linguistic, and cultural groups. TRIAL REGISTRATION: Clinicaltrials.gov ( #NCT05336955 ; Registration Date: 4/20/2022).
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Pessoas com Deficiência , Deficiência Intelectual , Serviços de Saúde Mental , Adolescente , Adulto , Criança , Humanos , Deficiências do Desenvolvimento/terapia , Deficiência Intelectual/terapia , Grupos Raciais , Adulto Jovem , Pessoa de Meia-Idade , Estudos de Equivalência como Asunto , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
Research teams must collaborate with people with intellectual and developmental disabilities to identify effective and inclusive responses to the COVID-19 pandemic and other public health emergencies. Collaborating remotely requires telecommunication and other technologies. We designed and evaluated a digital "Toolkit for Remote Inclusive Research" to provide research teams with evidence-informed strategies to make remote research accessible to and inclusive of people with intellectual and developmental disabilities. First, we completed a rapid scoping review to identify technology used by people with intellectual and developmental disabilities on collaborative research teams. Second, we designed a digital toolkit featuring 23 strategies identified in the review. Third, six inclusive researchers evaluated the toolkit. We illustrate how our team used these evidence-informed strategies during the past year to develop this and other tools to support inclusive research.
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Deficiência Intelectual , Humanos , Pandemias , Pesquisa Participativa Baseada na ComunidadeRESUMO
AIM: To explore concurrent validity, convergent validity, interrater reliability, test-retest reliability, and Rasch model analysis of the School Participation Questionnaire (SPQ), a tool for teachers to assess personal and environmental determinants of school participation. METHOD: Teachers of children with additional support needs, including intellectual disability, autism, and learning difficulties completed measures. Data were collected using the SPQ and the Participation and Environment Measure for Children and Youth (PEM-CY). Test-retest and interrater reliability were assessed using intraclass correlation coefficients (ICCs). Internal consistency was assessed with Cronbach's alpha. Concurrent and convergent validity were explored via correlations with the PEM-CY. Further psychometrics were examined using a Rasch model. RESULTS: One hundred and eighty-seven children (136 [72.7%] male; mean age 9y [range 5y 6mo-12y 10mo, SD 2y]) were assessed by 67 teachers. Cronbach's alpha, test-retest, and interrater reliability were acceptable-excellent across each SPQ scale (alphas=0.89, 0.9, 0.94, 0.79; test-retest ICCs=0.64, 0.61, 0.78, 0.62; interrater ICCs=0.85, 0.71, 0.90, 0.81). Concurrent and convergent validity were confirmed with significant positive correlations between SPQ and PEM-CY. After Mokken and Rasch model analysis, person and item reliability were good, and unidimensionality was confirmed. Mean administration time was 8.2 minutes. INTERPRETATION: The results suggest that the SPQ is a rapid, reliable, and valid tool for assessment of participation-related indicators in schools.
Assuntos
Cognição , Instituições Acadêmicas , Adolescente , Criança , Feminino , Humanos , Masculino , Psicometria , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
BACKGROUND: We conducted a rapid scoping review to identify how inclusive research teams use technology during the research process that could support remote collaboration during public health emergencies like the COVID-19 pandemic. METHOD: We searched three databases and conducted a hand search. Two independent reviewers screened 1498 abstracts and titles for inclusion criteria; 81 full text articles were further reviewed; 47 were included. We extracted information about each type of technology, categorised technology used during the research process, and documented described accommodations. RESULTS: We identified 47 articles and 94 examples of technologies used by people with intellectual and developmental disabilities throughout the research process: team formation and team function (38), data collection (19), data analysis (17) and dissemination (20). CONCLUSIONS: Technology use by team members with intellectual and developmental disabilities demonstrates promise for remote research collaborations during public health and climate emergencies and teams with members living in diverse locations.
Assuntos
COVID-19 , Deficiência Intelectual , Criança , Deficiências do Desenvolvimento , Humanos , Pandemias , SARS-CoV-2RESUMO
BACKGROUND: The purpose of this study was to identify potential barriers to patient reported outcome measure (PROM) adoption with youth and young adults with intellectual and/or developmental disabilities (IDD) and to understand current PROM adoption patterns of paediatric practitioners working with this population. METHODS: We used a web-based survey to collect data from paediatric practitioners who work with youth with IDD about factors influencing the adoption of PROMs and the frequency of PROM use across age groups (elementary, middle school and high school/transition age) and practice settings (school and rehabilitation). RESULTS: A total of 113 paediatric practitioners (occupational therapist = 48, physical therapist = 32, physician = 16, other = 17) responded to the survey with an average of 15 years of experience working with youth ages 8-21 with IDD. Accessibility and appropriateness, psychometric evidence, and time were most frequently ranked among the top three factors that influence practitioners' adoption of PROMs. Practitioners reported 'never or rarely' using PROMs 39%-65% of the time across age groups. CONCLUSIONS: Our results suggest that paediatric practitioners may be infrequently using PROMs with youth with IDD because of perceived inaccessibility and time requirements of PROMs and practice-environment barriers, including access to evidence and caseload demands. Because PROMs can facilitate client-centred care, addressing these potential barriers to adoption may improve paediatric rehabilitation.
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Deficiências do Desenvolvimento , Deficiência Intelectual , Adolescente , Adulto , Criança , Humanos , Medidas de Resultados Relatados pelo Paciente , Inquéritos e Questionários , Adulto JovemRESUMO
IMPORTANCE: Patient-reported outcome measures (PROMs) are used in rehabilitation to evaluate outcomes. We integrated a new PROM for transition-age youth with intellectual and/or developmental disabilities (IDD), the Pediatric Evaluation of Disability Inventory-Patient-Reported Outcome (PEDI-PRO), with a computer-delivered survey platform (Accessible Testing Learning and Assessment System) to enhance cognitive accessibility. OBJECTIVE: To evaluate the usability of the PEDI-PRO software and to investigate its reliability and acceptability to transition-age youth with IDD. DESIGN: Clinical field testing and a survey; repeated-observation test-retest design. SETTING: Clinicians evaluated the PEDI-PRO's usability in school and health care contexts; research staff conducted reliability and acceptability testing in natural settings. PARTICIPANTS: Occupational therapists (n = 12) and physical therapists (n = 2) administered the PEDI-PRO to 39 youths with IDD. Fifty-five transition-age youth with IDD (M age = 19.7) completed the PEDI-PRO twice. OUTCOMES AND MEASURES: Clinicians completed the System Usability Survey (SUS) and open-ended feedback. Youth provided feedback via a brief survey. RESULTS: The mean SUS rating was 84.00 (SD = 11.68), exceeding the industry standard. Intraclass correlations ranged from .80 to .83 across the three PEDI-PRO domains. Internal reliability (α) was .86-.90 across domains. Youth reported that they liked the accessibility features: interface images, button sounds, read-aloud audio, and rating category choices (M = 88.8%, SD = 5.1%). CONCLUSIONS AND RELEVANCE: The PEDI-PRO supported transition-age youth with IDD to reliably report perceived functional performance. The accessible software was favorably perceived by both clinicians and youth. WHAT THIS ARTICLE ADDS: Design features of the PEDI-PRO make it easy to use in practice with transition-age youth with IDD. The PEDI-PRO's cognitively accessible administrative design, including step-by-step instructions for teaching PROM use and a self-reflective questioning technique, could serve as a training model for this and other PROMs.
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Avaliação da Deficiência , Pessoas com Deficiência , Adolescente , Criança , Humanos , Medidas de Resultados Relatados pelo Paciente , Reprodutibilidade dos Testes , SoftwareRESUMO
People with intellectual disability (ID) are increasingly involved in stakeholder-engaged research, such as "inclusive research" (IR). To understand the processes that foster and maintain IR with individuals with ID, we used a narrative interview approach with co-researchers with ID (n = 6) and academic researchers (n = 8). We analyzed the data using grounded theory principles. We then developed a model describing how contextual factors and team-level factors and processes coalesce to foster and maintain IR collaborations. We observed that team members' values and characteristics are foundational to IR and drive a commitment to accessibility. Contextual factors, including funding and partnership duration, influence teams' processes and structures. These processes and structures influence the extent to which co-researchers perceive the IR team to be cofacilitated or academic-facilitated. Co-researcher involvement is partially maintained by perceived personal and societal benefits. Optimizing the relationship between these factors may support involvement of people with ID in stakeholder-engaged research projects.
Assuntos
Pesquisa Participativa Baseada na Comunidade/métodos , Comportamento Cooperativo , Deficiência Intelectual/psicologia , Relações Interprofissionais , Pesquisadores/psicologia , Adulto , Austrália , Europa (Continente) , Feminino , Humanos , Entrevistas como Assunto , Estados UnidosRESUMO
We conducted a meta-synthesis to explore how Asian immigrant parents in the United States enact their perceived parental role while using health and educational services for their child with developmental disabilities. We identified 11 qualitative studies for analysis, and examined these studies using a constant comparative approach and thematic analysis informed by role theory and acculturation theory. Based on our analysis, five themes related to parents' role enactment emerged: (a) parents perceive a multifaceted parental role; (b) parents' individual factors influence their role enactment; (c) system factors influence parents' role enactment; (d) parents use coping strategies to address role dissatisfaction; and (e) parental role enactment is a continuously evolving process influenced by acculturation, which spirals them toward their ultimate goal of helping their child thrive. Findings can inform practitioners' and researchers' understanding of how to create a culturally safe environment to support Asian immigrant parents in realizing their parental role.
Assuntos
Deficiências do Desenvolvimento , Emigrantes e Imigrantes , Aculturação , Criança , Humanos , Poder Familiar , Pais , Estados UnidosRESUMO
BACKGROUND: Young adults with intellectual/developmental disabilities and co-occurring mental health conditions (IDD-MH) experience significant mental health disparities. Barriers to services include transportation and stigma associated with services. Peer mentoring (PM) may be one solution to these barriers. METHODS: We conducted exploratory research to develop a PM intervention for young adults with IDD-MH by partnering with 3 young adults with IDD-MH and a seven-member advisory board. In addition, we conducted focus groups with mental health clinicians (n = 10), peer providers (n = 9), and transition specialists (n = 20) to identify the desired PM outcomes and features and content that may facilitate these outcomes. RESULTS: Prioritized outcome: identifying and utilizing leisure activities as coping strategies. PM features: mentors should use relationship- and outcome-driven actions to operationalize a mentee-centred approach. Features and content considerations: safety, mentor matching, degree of structure, mentor training and support, and collaboration with mentees' support teams. DISCUSSION: Findings are aligned with previous research on PM.
Assuntos
Deficiência Intelectual , Tutoria , Criança , Deficiências do Desenvolvimento , Humanos , Saúde Mental , Mentores , Adulto JovemRESUMO
AIMS: There is a need to develop self-reports that measure youth's responsibility for major life tasks. We examined if the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test's (PEDI-CAT) operationalization of responsibility is salient to youth with developmental disabilities (DD). The PEDI-CAT defines responsibility as, "the extent to which the young person take[s] control over organizing and managing major life tasks." METHODS: During six focus groups (n = 43), youth generated examples of behaviors and actions that demonstrated responsibility. Data were coded as "responsibility" or "discrete skills" per PEDI-CAT definitions. We reviewed examples in both categories and compared and contrasted how youth described responsibility. RESULTS: Youth's descriptions of responsibility aligned with the PEDI-CAT's responsibility construct 42.75% of the time. In these instances, youth perceived themselves as causal agents who had to make decisions and self-regulate to manage and organize major life tasks. Otherwise, youth described themselves as causal agents who adhered to rules, social norms, and expectations of others during the execution of discrete skills. CONCLUSIONS: Youth perceive themselves as responsible, causal agents during both the coordination and management of major life tasks and during the execution of discrete skills. As this is not aligned with the PEDI-CAT's operationalization of responsibility, there is a need to further explore youth's perceptions of responsibility prior to developing a self-report.
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Deficiências do Desenvolvimento/psicologia , Pessoas com Deficiência/psicologia , Autocuidado/estatística & dados numéricos , Autoimagem , Adolescente , Avaliação da Deficiência , Feminino , Grupos Focais , Humanos , Masculino , Medidas de Resultados Relatados pelo Paciente , Pesquisa Qualitativa , Adulto JovemRESUMO
Use of patient-reported outcome measures (PROMs) may increase the involvement of young people with developmental disabilities in their healthcare decisions and healthcare-related research. Young people with developmental disabilities may have difficulty completing PROMs because of extraneous assessment demands that require additional cognitive processes. However, PROM design features may mitigate the impact of these demands. We identified and evaluated six pediatric PROMs of self-care and domestic life tasks for the incorporation of suggested design features that can reduce cognitive demands. PROMs incorporated an average of 6 out of 11 content, 7 out of 14 layout, and 2 out of 9 administration features. This critical review identified two primary gaps in PROM design: (1) examples and visuals were not optimized to reduce cognitive demands; and (2) administration features that support young people's motivation and self-efficacy and reduce frustration were underutilized. Because assessment demands impact the validity of PROMs, clinicians should prospectively consider the impact of these demands when selecting PROMs and interpreting scores. WHAT THIS PAPER ADDS: Patient-reported outcome measure (PROM) design features can reduce assessment demands related to cognitive processes. Pediatric PROMs underutilize design features that decrease cognitive demands of self-reporting.
Assuntos
Transtornos Cognitivos/etiologia , Cognição/fisiologia , Deficiências do Desenvolvimento/psicologia , Medidas de Resultados Relatados pelo Paciente , Transtornos Cognitivos/psicologia , Deficiências do Desenvolvimento/diagnóstico , Humanos , Motivação , Estudos Retrospectivos , Autocuidado , Adulto JovemRESUMO
AIM: Project TEAM (Teens making Environment and Activity Modifications) teaches transition-age young people with developmental disabilities, including those with co-occurring intellectual or cognitive disabilities, to identify and resolve environmental barriers to participation. We examined its effects on young people's attainment of participation goals, knowledge, problem-solving, self-determination, and self-efficacy. METHOD: We used a quasi-experimental, repeated measures design (initial, outcome, 6-week follow-up) with two groups: (1) Project TEAM (28 males, 19 females; mean age 17y 6mo); and (2) goal-setting comparison (21 males, 14 females; mean age 17y 6mo). A matched convenience sample was recruited in two US states. Attainment of participation goals and goal attainment scaling (GAS) T scores were compared at outcome. Differences between groups for all other outcomes were analyzed using linear mixed effects models. RESULTS: At outcome, Project TEAM participants demonstrated greater knowledge (estimated mean difference: 1.82; confidence interval [CI]: 0.90, 2.74) and ability to apply knowledge during participation (GAS: t[75]=4.21; CI: 5.21, 14.57) compared to goal-setting. While both groups achieved significant improvements in knowledge, problem-solving, and self-determination, increases in parent reported self-determination remained at 6-week follow-up only for Project TEAM (estimated mean difference: 4.65; CI: 1.32, 7.98). Significantly more Project TEAM participants attained their participation goals by follow-up (Project TEAM=97.6%, goal-setting=77.1%, p=0.009). INTERPRETATION: Both approaches support attainment of participation goals. Although inconclusive, Project TEAM may uniquely support young people with developmental disabilities to act in a self-determined manner and apply an environmental problem-solving approach over time. WHAT THIS PAPER ADDS: Individualized goal-setting, alone or during Project TEAM (Teens making Environment and Activity Modifications) appears to support attainment of participation goals. Project TEAM appears to support young people with developmental disabilities to apply an environmental problem-solving approach to participation barriers. Parents of young people with developmental disabilities report sustained changes in self-determination 6 weeks after Project TEAM.
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Remediação Cognitiva/métodos , Deficiências do Desenvolvimento/reabilitação , Deficiência Intelectual/reabilitação , Terapia Ocupacional/métodos , Avaliação de Resultados em Cuidados de Saúde , Resolução de Problemas , Adolescente , Adulto , Comorbidade , Deficiências do Desenvolvimento/epidemiologia , Feminino , Seguimentos , Objetivos , Humanos , Deficiência Intelectual/epidemiologia , Masculino , Autonomia Pessoal , Autoeficácia , Participação Social , Adulto JovemRESUMO
BACKGROUND: There is a need for mentoring interventions in which transition-age youth and young adults with intellectual and/or developmental disabilities (I/DD) participate as both mentors and mentees. Project TEAM (Teens making Environment and Activity Modifications) is a problem-solving intervention that includes an electronic peer-mentoring component. METHODS: Forty-two mentees and nine mentors with I/DD participated. The present authors analysed recorded peer-mentoring calls and field notes for mentee engagement, mentor achievement of objectives and supports needed to implement peer mentoring. RESULTS: Overall, mentees attended 87% of scheduled calls and actively engaged during 94% of call objectives. Across all mentoring dyads, mentors achieved 87% of objectives and there was a significant relationship between the use of supports (mentoring script, direct supervision) and fidelity. CONCLUSIONS: Transition-age mentees with I/DD can engage in electronic peer mentoring to further practice problem-solving skills. Mentors with I/DD can implement electronic peer mentoring when trained personnel provide supports and individualized job accommodations.
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Deficiências do Desenvolvimento/psicologia , Deficiência Intelectual/psicologia , Tutoria/métodos , Mentores , Grupo Associado , Participação Social/psicologia , Adolescente , Adulto , Estudos de Viabilidade , Feminino , Humanos , Masculino , Avaliação de Programas e Projetos de Saúde , Adulto JovemRESUMO
AIM: This study examined the item interpretability and rating scale use of the Pediatric Evaluation of Disability Inventory-Patient-Reported Outcome (PEDI-PRO) by young people with developmental disabilities. The PEDI-PRO assesses the functional performance of discrete functional tasks in the context of everyday life situations. METHOD: A two-phase cognitive interview design was implemented with a convenience sample of 37 young people (mean age 19y, SD 2y 5mo; 13 males and 24 females; 68% with intellectual disability) with developmental disabilities. In phase I, 182 item candidates were each reviewed by an average of four young people. In phase II, 103 items were carried forward or revised and each reviewed by an average of seven additional young people. Two raters coded responses for intended item interpretation and performance quality; codes were analysed using descriptive statistics. Qualitative analysis explored young people's self-evaluation process. RESULTS: Items were interpreted as intended by most young people (mean 86%). Young people can use PEDI-PRO response categories appropriately to describe their performance: 94% of positive performance descriptions coincided with a positive response category choice; 73% of negative descriptions coincided with a negative response category choice. Young people interpreted items in a literal manner, and their self-evaluation incorporated the use of supports that facilitate functional performance. INTERPRETATION: The PEDI-PRO's measurement framework appears to support the self-evaluation of functional performance of young people with developmental disabilities.
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Deficiências do Desenvolvimento/diagnóstico , Autoavaliação Diagnóstica , Avaliação da Deficiência , Crianças com Deficiência , Medidas de Resultados Relatados pelo Paciente , Adolescente , Criança , Feminino , Humanos , Entrevistas como Assunto , Masculino , Autorrelato , Adulto JovemRESUMO
The field of rehabilitation has increasingly called for the use of patient-reported outcome measures (PROMs) in research and practice. Given that many rehabilitation patients present with conditions associated with cognitive impairments, it is imperative to reduce barriers to PROM use for this population. The purpose of this article is to develop a comprehensive understanding of cognitive accessibility that can prospectively inform the design of PROMs. We put forth the following definition of cognitive accessibility for PROMs: cognitive accessibility is present when assessment design anticipates respondent variability in cognitive abilities and, to the greatest extent possible, reduces cognitive demands and/or supports cognitive processes to enable respondents with a range of cognitive abilities to interpret and respond to assessment items as intended. Our operationalization of cognitive accessibility in measurement in the field of rehabilitation is informed by 2 assumptions: (1) cognitive accessibility results from an interaction between the individual's capacities and the demands of the assessment and assessment context, and (2) individuals with cognitive impairments have the right to be involved in decisions about their lives, including health care decisions. This article proposes 3 design features that can be optimized for cognitive accessibility: content, layout, and administration procedures. We end with a discussion of next steps that the field of rehabilitation measurement can undertake to advance our understanding of cognitive accessibility.
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Disfunção Cognitiva , Avaliação de Resultados da Assistência ao Paciente , Modalidades de Fisioterapia/normas , Humanos , Medidas de Resultados Relatados pelo PacienteRESUMO
AIM: This study aimed to explore the test-retest reliability of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test for autism spectrum disorders (PEDI-CAT [ASD]), the concurrent validity of this test with the Vineland Adaptive Behavior Scales (VABS-II), and parents' perceptions of usability. METHOD: A convenience sample of participants (n=39) was recruited nationally through disability organizations. Parents of young people aged 10 to 18 years (mean age 14y 10mo, SD 2y 8mo; 34 males, five females) who reported a diagnosis of autism were eligible to participate. Parents completed the VABS-II questionnaire once and the PEDI-CAT (ASD) twice (n=29) no more than 3 weeks apart (mean 12d) using computer-simulated administration. Parents also answered questions about the usability of these instruments. We examined score reliability using intraclass correlation coefficients (ICCs) and we explored the relationship between instruments using Spearman's rank correlation coefficients. Parent responses were grouped by common content; content categories were triangulated by an additional reviewer. RESULTS: Intraclass correlation coefficients indicate excellent reliability for all PEDI-CAT (ASD) domain scores (ICC ≥ 0.86). PEDI-CAT (ASD) and VABS-II domain scores correlated as expected or stronger than expected (0.57-0.81). Parents reported that the computer-based PEDI-CAT (ASD) was easy to use and included fewer irrelevant questions than the VABS-II instrument. INTERPRETATION: These findings suggest that the PEDI-CAT (ASD) is a reliable assessment that parents can easily use. The PEDI-CAT (ASD) operationalizes the International Classification of Function, Disability and Health for Children and Youth constructs of 'activity' and 'participation', and this preliminary research suggests that the instrument's constructs are related to those of VABS-II.
Assuntos
Transtorno do Espectro Autista/diagnóstico , Escalas de Graduação Psiquiátrica/normas , Psicometria/instrumentação , Adolescente , Criança , Avaliação da Deficiência , Feminino , Humanos , Masculino , Pais , Satisfação do Paciente , Reprodutibilidade dos TestesRESUMO
AIM: This cross-sectional study examined whether impairments or functional skills are associated with the level of responsibility for life tasks for children and adolescents with autism spectrum disorders (ASDs). METHOD: Parents of 263 children and adolescents with ASDs (215 males; 48 females; mean age 12y 6mo [SD 4y 6mo], range 3-21y) completed an online survey that included the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test - Autism Spectrum Disorders (PEDI-CAT-ASD) Daily Activities, Social/Cognitive, and Responsibility domains, a demographic questionnaire, and the Social Communication Questionnaire (SCQ) Current. The International Classification of Functioning, Disability and Health Framework guided the selection of model variables. We used hierarchical multiple regression to examine the relationship between impairment and functional skill predictor variables and the outcome variable, Responsibility. Age was entered in step 1 to control for the impact of development. SCQ Current, IQ, and remaining PEDI-CAT-ASD domains were then entered in step 2. RESULTS: After controlling for age, the model showed that step 2 predictor variables representing both impairments and functional skill improved the model (p<0.001). All variables except the SCQ score were significant predictors of Responsibility. The variance explained by the Daily Activities (2.7%) and Social/Cognitive (4.8%) domain scores was greater than IQ (0.3%). INTERPRETATION: The functional skills of Daily Activities and Social/Cognitive domains were more strongly associated with the management of life tasks than impairments after controlling for age.
Assuntos
Atividades Cotidianas , Transtornos Globais do Desenvolvimento Infantil/fisiopatologia , Habilidades Sociais , Adolescente , Adulto , Criança , Pré-Escolar , Estudos Transversais , Avaliação da Deficiência , Feminino , Humanos , Masculino , Modelos Estatísticos , Índice de Gravidade de Doença , Adulto JovemRESUMO
PURPOSE: This study further investigated items with differential item function (DIF) in the Social/Cognitive domain of a measure of everyday activity performance, the Pediatric Evaluation of Disability Inventory-Computer Adapted Test version for Autism "PEDI-CAT (ASD)," to understand possible sources of response variation in a heterogeneous sample of youth with autism compared to the national standardization sample. METHODS: Cross-sectional design. A convenience sample of parents who identified they had a child between 3 and 21 years (M = 11.9 years, SD = 4.67 years) with autism (n = 365) completed an online survey that included the PEDI-CAT (ASD) and descriptive measures. For 28 items previously identified as having DIF, the PEDI-CAT (ASD) expected item score curves for the autism sample were compared to the original PEDI-CAT standardization sample. The weighted area between expected score curves (wABC) was also calculated; values >0.24 indicate significant DIF. RESULTS: All items had wABC that exceeded the criterion. Compared with peers without disabilities at the same ability level, 11 items were significantly more difficult for the youth with autism and 16 items were significantly easier. One item demonstrated non-uniform DIF. CONCLUSION: Differential responses could indicate that: (1) children with autism have a different developmental pattern of skill acquisition for everyday activities in the Social/Cognitive domain, or (2) parents of children with autism utilize a unique appraisal process when assessing their children's functional performance of everyday activities. Further research is required to better understand the factors leading to differential responses on the targeted items. The study illustrates the value of in-depth analysis of DIF to gain insight into the impact of a clinical condition on functional performance.