Daily living skills in children with autism spectrum disorder and intellectual disability: A comparative study from Turkey

Kılınçaslan, Ayşe; Kocas, Sule; Bozkurt, Sumeyye; Kaya, İlyas; Derin, Songül; Aydın, Resa

doi:10.1016/j.ridd.2018.12.005

Cited by 35 publications

(29 citation statements)

References 48 publications

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“…PedsQL 4.0 scores were compiled from published datasets in which similar age of inclusion criteria was implemented. Raw PedsQL 4.0 score data from healthy controls, type 1 (T1D) and type 2 diabetes (T2D)[18], intellectual disability (ID)[19], and idiopathic autism[12] were utilized as comparative assessment metric. For ease of interpretability, our PMD, RTT, and SYNGAP1- ID data were aggregated to create a new syndromic ASD cohort.…”

Section: Resultsmentioning

confidence: 99%

Health-related quality of life in individuals with syndromic autism spectrum disorders

Bolbocean

McCormack

et al. 2020

Preprint

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BACKGROUND: Children with autism have a significantly lower quality of life compared with their neurotypical peers. While multiple studies have quantified the impact of autism on health-related quality of life (HRQoL) through standardized surveys such as the PedsQL, none have specifically investigated the impact of syndromic autism spectrum disorder on childrens HRQoL or on family quality of life. Here we evaluate HRQoL in children diagnosed with three syndromic Autism Spectrum Disorders (ASDs): Phelan-McDermid syndrome (PMD), Rett syndrome (RTT), and SYNGAP1-related intellectual disability (SYNGAP1-ID). METHODS: A standardized online Pediatric Quality of Life Inventory (PedsQL 4.0) survey and the Beach Center Family Quality of Life Scale (FQOL) were administered to caregivers of children with PMD (n= 213), RTT (n= 148), and SYNGAP1-ID (n= 30). The PedsQL 4.0 measures health-related quality of life in four dimensions: physical, emotional, social and school. The Beach Center Family Quality of Life Scale measures five dimensions: family interaction, parenting, emotional well-being, physical/material well-being and disability-related support. RESULTS: For the PedsQL, the most severely impacted dimension in children with syndromic autism was physical functioning. In comparing individual dimensions among the genetically-defined syndromic autisms, individuals with RTT had significantly worse physical functioning, emotional and school scores than PMD. This finding is congruent with the physical regression typically associated with Rett syndrome. Strikingly, syndromic autism results in worse quality of life than other chronic disorders including idiopathic autism. CONCLUSIONS: The reduced HRQoL for children with syndromic autism spectrum disorders relative to other chronic childhood illnesses, likely reflects their lack of targeted therapies. This study demonstrates the utility of caregiver surveys in prioritizing phenotypes, which may be targeted as clinical endpoints for genetically defined ASDs.

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Section: Resultsmentioning

confidence: 99%

Health-related quality of life in individuals with syndromic autism spectrum disorders

Bolbocean

McCormack

et al. 2020

Preprint

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“…are included. Some authors have found differences in ADL profiles between these populations: worse performance in ASD children in hygiene or dressing than in the ID population [66] or worse performance in dressing, personal hygiene, and eating skills, including postural control and fine motor skills, in children with developmental coordination disorder compared with normally developed children [11], so it should be interesting to try to find specific BADL profiles.…”

Section: Discussionmentioning

confidence: 99%

A New Assessment for Activities of Daily Living in Spanish Schoolchildren: A Preliminary Study of its Psychometric Properties

Barrios-Fernández

Delgado

Gómez

et al. 2020

IJERPH

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Background: Activities of daily living (ADL), which are divided into basic (BADL) and instrumental (IADL), allows us to survive and to live in the society. Cognitive skills are a key aspect in BADL outcomes. After reviewing existing BADL tools for Spanish schoolchildren, issues such as not covering the full age range or not having a BADL-centred vision were found. We aim to develop a new tool for BADL assessment in Spanish schoolchildren. Methods: The new tool was administered to 375 participants (47.2% boys and 52.8% girls) from 6 to 12 years of age. Analyses were carried out to find out the structure (semiconfirmatory factor analysis) and internal consistency (ordinal alpha) of BADL. Results: Four scales formed the instrument (Eating, Personal Hygiene, Getting Dressed, and General Functioning) with an interpretable solution of 12 factors (Manual Dexterity, Proprioception, Oral Sensitivity, Good Manners, Hygiene and Grooming, Toileting Needs Communication, Bladder and Bowel Control, Showering, Independent Dressing Tasks, Full Dressing, Executive Functions, and Self-Regulation) with 84 items + 6 qualitative items for girls. The reliability values obtained were acceptable (.70–.88). Conclusions: The tool seems to be a practical and reliable instrument to assess BADL and cognitive skills during BADL in Spanish schoolchildren.

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“…The development of these skills is implemented in the family and facilitated by parents. For this, parents need to be given training (Kilincaslan et al, 2019).…”

Section: Training Needs For Parents In Learning Daily Activities For Children Idmentioning

confidence: 99%

Parents’ training needs for intellectual disability learning about daily life activities

Mumpuniarti

Ishartiwi

Azizah

et al. 2021

CJES

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This study aims to explore the training needs of parents for the future of children with intellectual disabilities (ID). The survey research method is used in this study. The questionnaire was used as a guide for parents, and then every chosen programme required by the parents was mentioned in the interview. Data analysis was carried out by categorising parental training needs into four domains of daily activities. The respondents were eight parents who needed training on the programmes of daily activities in order to train their children with ID at home. The findings show that those parents have still not been able to express their rights to convey their needs. Likewise, when they are invited to arrange the structure of the workout schedule at home, they still respond passively. The conclusion is that schools should start to explore the needs of daily activities programmes and develop learning programmes with parents. Keywords: Parents’ training, intellectual disability, learning.

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Daily living skills in children with autism spectrum disorder and intellectual disability: A comparative study from Turkey

Cited by 35 publications

References 48 publications

Health-related quality of life in individuals with syndromic autism spectrum disorders

Health-related quality of life in individuals with syndromic autism spectrum disorders

A New Assessment for Activities of Daily Living in Spanish Schoolchildren: A Preliminary Study of its Psychometric Properties

Parents’ training needs for intellectual disability learning about daily life activities

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