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        Research

        Child protection involvement of children of mothers with intellectual disability

        Children born to parents with intellectual disability (ID) have been shown as disproportionally represented in child protection services however with limited population-based research. ...

        Research

        Apgar score and risk of autism

        This study suggests that low Apgar score is associated with higher risk of autism spectrum disorder, and in particular autistic disorder ...

        Research

        Early mortality and primary causes of death in mothers of children with intellectual disability or Autism spectrum disorder

        Mothers of children with intellectual disability or autism spectrum disorder (ASD) have poorer health than other mothers. ...

        Research

        An investigation of the determinants of quality of life in adolescents and young adults with Down syndrome

        Quality of life of young people with Down syndrome was most negatively associated with burden of medical conditions, but also with lack of friendships ...

        Research

        Young people with intellectual disability transitioning to adulthood: Do behaviour trajectories differ in those with and without down syndrome

        Changes in emotional and behavioural problems for young people with intellectual disability with and without Down syndrome as they transition into adulthood ...

        Research

        Autism risk associated with parental age and with increasing difference in age between the parents

        Increases in ASD was not only limited to advancing paternal or maternal age alone but also to differences parental age including younger or older similarly age ...

        Research

        Population-based prevalence of intellectual disability and autism spectrum disorders in Western Australia

        The prevalence of intellectual disability has risen in WA over the last 10 years with most of this increase due to mild or moderate intellectual disability ...

        Research

        How Well Does the EQ-5D-Y-5L Describe Children With Intellectual Disability?: “There's a Lot More to My Child Than That She Can't Wash or Dress Herself.”

        The EQ-5D-5L is a generic health utility instrument for measuring health-related quality of life (HRQoL), with self-report and proxy report versions for children (EQ-5D-Y-5L). Children with intellectual disability (ID) are a heterogeneous population whose impairments and comorbidities place them at risk of poor HRQoL. This study aimed to describe the content validity and suitability for children with ID of a proxy report version of the EQ-5D-Y-5L as seen by their caregivers. ...

        Research

        Communication of individuals with CDKL5 deficiency disorder as observed by caregivers: A descriptive qualitative study

        CDKL5 deficiency disorder (CDD) is a genetically caused developmental epileptic encephalopathy that causes severe communication impairments. Communication of individuals with CDD is not well understood in the literature and currently available measures are not well validated in this population. Accurate and sensitive measurement of the communication of individuals with CDD is important for understanding this condition, clinical practice, and upcoming interventional trials.  ...

        Research

        Content validation of the Quality of Life Inventory—Disability

        Satisfactory content validity is reported, where ongoing consumer feedback shaped the dataset from which the final items were selected ...

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