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- D'Arcy, E, et al.
(författare)
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Content validation of common measures of functioning for young children against the International Classification of Functioning, Disability and Health and Code and Core Sets relevant to neurodevelopmental conditions
- 2022
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Ingår i: Autism : the international journal of research and practice. - : SAGE Publications. - 1461-7005. ; 26:4, s. 928-939
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Tidskriftsartikel (refereegranskat)abstract
- Content validity describes the extent to which a measure represents, and is relevant to, the construct it aims to assess. The International Classification of Functioning, Disability and Health and derived Core/Code Sets (Sets) for autism, attention deficit-hyperactivity disorder, cerebral palsy and early developmental delay and disability are adequate to establish the content validity of measures aiming to assess functioning in young children with neurodevelopmental conditions (NDCs). This article aimed to assess the content validity of comprehensive assessments of functioning for young children with NDCs against these standards. Twenty-two common measures of functioning were evaluated for content validity against the International Classification of Functioning, Disability and Health at a domain level, with 10 measures analysed at the item-level and compared to the Sets relevant to young children with NDCs. Measures covered between 21% and 57% of the combined Set codes and 19% to 63% of codes from specific Sets. Much of this variation was between measures, with some variation due to differences between individual Sets. The percentages reflect that measures heavily focus on activities and participation areas, with environmental factors rarely assessed. These findings are useful for clinicians, policymakers, and researchers in identifying the most appropriate measures for assessing functioning in young children with neurodevelopmental conditions. Young children who have developmental delay, autism, or other neurodevelopmental conditions can have difficulties doing things in different areas of their life. What they can and cannot do is called their level of functioning. There are lots of assessment measures that aim to assess functioning. But, we are not sure if these measures assess all the things we need to know about these children’s functioning. Other research has identified lists of items (codes) that need to be assessed to understand functioning for young children with different neurodevelopmental conditions fully. These lists include body functions (the things a child’s body or brain can do), activities and participation (the activities and tasks a child does) and environmental factors (parts of the environment that can influence functioning). In this study, we looked at the items from these lists assessed by different functioning measures to see how they compared to what should be assessed. The measures that we looked at covered 21%–57% of all the codes and 19%–63% of the codes for lists specific to different conditions. Most of the measures focused on activity and participation codes, and they rarely assessed environmental factors. Knowing which codes and how much of the lists the measures assess can help researchers, clinicians and policymakers to choose measures that are more appropriate for young children with neurodevelopmental conditions.
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| 2. |
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| 3. |
- Evans, K, et al.
(författare)
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Perceived Support Needs of School-Aged Young People on the Autism Spectrum and Their Caregivers
- 2022
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Ingår i: International journal of environmental research and public health. - : MDPI AG. - 1660-4601. ; 19:23
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Tidskriftsartikel (refereegranskat)abstract
- With increasing demands for health, disability and education services, innovative approaches can help distribute limited resources according to need. Despite an increased focus on support needs within the clinical pathway and policy landscape, the body of research knowledge on this topic is at a relatively early stage. However, there appears to be a sense of unmet support needs and dissatisfaction with the provision of required support following an autism diagnosis amongst caregivers of young people on the spectrum. The primary aim of this study was to explore the perceived support needs of Australian school-aged young people on the spectrum and their caregiver(s). This was achieved using a phenomenographic Support Needs Interview conducted by occupational therapists during home-visits with caregivers of 68 young people on the spectrum (5–17 years). Qualitative data analysis resulted in two hierarchical outcome spaces, one each for young people and their caregivers, indicating interacting levels of support need areas that could be addressed through a combination of suggested supports. These support needs and suggested supports align with almost all chapters within the Body Functions, Activities and Participation and Environmental Factors domains of the International Classification of Functioning, Disability and Health. The overall goals of meeting these complex and interacting support needs were for the young people to optimize their functioning to reach their potential and for caregivers to ensure the sustainability of their caregiving capacity. A series of recommendations for support services, researchers and policy makers have been made to position support needs as central during the assessment, support and evaluation phases.
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| 4. |
- Hayden-Evans, M, et al.
(författare)
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An Evaluation of the Overall Utility of Measures of Functioning Suitable for School-Aged Children on the Autism Spectrum: A Scoping Review
- 2022
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Ingår i: International journal of environmental research and public health. - : MDPI AG. - 1660-4601. ; 19:21
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Tidskriftsartikel (refereegranskat)abstract
- A diagnosis of an autism spectrum condition (autism) provides limited information regarding an individual’s level of functioning, information key in determining support and funding needs. Using the framework introduced by Arksey and O’Malley, this scoping review aimed to identify measures of functioning suitable for school-aged children on the autism spectrum and evaluate their overall utility, including content validity against the International Classification of Functioning, Disability and Health (ICF) and the ICF Core Sets for Autism. The overall utility of the 13 included tools was determined using the Outcome Measures Rating Form (OMRF), with the Adaptive Behavior Assessment System (ABAS-3) receiving the highest overall utility rating. Content validity of the tools in relation to the ICF and ICF Core Sets for Autism varied, with few assessment tools including any items linking to Environmental Factors of the ICF. The ABAS-3 had the greatest total number of codes linking to the Comprehensive ICF Core Set for Autism while the Vineland Adaptive Behavior Scales (Vineland-3) had the greatest number of unique codes linking to both the Comprehensive ICF Core Set for Autism and the Brief ICF Core Set for Autism (6–16 years). Measuring functioning of school-aged children on the spectrum can be challenging, however, it is important to accurately capture their abilities to ensure equitable and individualised access to funding and supports.
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| 6. |
- Price, KM, et al.
(författare)
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Hypothesis-driven genome-wide association studies provide novel insights into genetics of reading disabilities
- 2022
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Ingår i: Translational psychiatry. - : Springer Science and Business Media LLC. - 2158-3188. ; 12:1, s. 495-
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Tidskriftsartikel (refereegranskat)abstract
- Reading Disability (RD) is often characterized by difficulties in the phonology of the language. While the molecular mechanisms underlying it are largely undetermined, loci are being revealed by genome-wide association studies (GWAS). In a previous GWAS for word reading (Price, 2020), we observed that top single-nucleotide polymorphisms (SNPs) were located near to or in genes involved in neuronal migration/axon guidance (NM/AG) or loci implicated in autism spectrum disorder (ASD). A prominent theory of RD etiology posits that it involves disturbed neuronal migration, while potential links between RD-ASD have not been extensively investigated. To improve power to identify associated loci, we up-weighted variants involved in NM/AG or ASD, separately, and performed a new Hypothesis-Driven (HD)–GWAS. The approach was applied to a Toronto RD sample and a meta-analysis of the GenLang Consortium. For the Toronto sample (n = 624), no SNPs reached significance; however, by gene-set analysis, the joint contribution of ASD-related genes passed the threshold (p~1.45 × 10–2, threshold = 2.5 × 10–2). For the GenLang Cohort (n = 26,558), SNPs in DOCK7 and CDH4 showed significant association for the NM/AG hypothesis (sFDR q = 1.02 × 10–2). To make the GenLang dataset more similar to Toronto, we repeated the analysis restricting to samples selected for reading/language deficits (n = 4152). In this GenLang selected subset, we found significant association for a locus intergenic between BTG3-C21orf91 for both hypotheses (sFDR q < 9.00 × 10–4). This study contributes candidate loci to the genetics of word reading. Data also suggest that, although different variants may be involved, alleles implicated in ASD risk may be found in the same genes as those implicated in word reading. This finding is limited to the Toronto sample suggesting that ascertainment influences genetic associations.
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