The present study aimed to examine the effects of the Quality Book Reading (NIKO) Early Intervention Program on Turkish mothers of children with Down syndrome aged between 2 and 6 years and their children. The research was conducted using the convergent parallel mixed design with 17 mother-child dyads determined by random assignment. Nine…

Background: The Australian Commission on Safety and Quality in Health Care recommends the development of reasonable adjustments to Comprehensive Care Standard to better suit the needs of people with intellectual disability. Method: An audit of adults with Down syndrome attending a mainstream internal medicine outpatient clinic was undertaken to…

Purpose: People with Down syndrome (DS) have a unique medical profile which may impact views of health. We aimed to explore the use of global health measures in DS. Methods: Prospective survey in the Mass General Hospital Down Syndrome Program (MGH DSP) from December 2018 to July 2019 with Patient Reported Outcomes Measurement Information System…

The COVID-19 outbreak affected the daily lives of individuals with Down syndrome, who were considered to have a higher risk of severe infection. While several studies have reported mental health issues in children and/or parents in the general population, no study has focused on people with Down syndrome and their caregivers. This study…

Background: People with intellectual disabilities may experience frailty earlier than the general population. This scoping review aimed to investigate how frailty is defined, assessed, and managed in adults with an intellectual disability; factors associated with frailty; and the potential impact of COVID-19 on frailty identification and…

This study evaluated the efficacy of an 8-week (two sessions/week; 60 min/session) adapted soccer intervention on skill performance and retention in 30 adults (18 men and 12 women) ages 17-40 years with autism spectrum disorder, Down syndrome, and intellectual disability. Of these 30 participants, 18 completed a 1-month retention test. The program…

Perceptions of parents of young children receiving early intervention are important to understand. Parents have valuable opinions on the delivery of early interventions services and can provide critical feedback that can help professionals revise their existing early intervention delivery modalities. In the current study, we examined the…

We studied whether there exist variations in pain responses between different intellectual and developmental disability (IDD) etiologies. Self-reports and facial expressions (Facial Action Coding System = FACS) were recorded during experimental pressure stimuli and compared among 31 individuals with IDD--13 with cerebral palsy (CP), nine with Down…

Background: Parenting styles mediate parental stress and child emotions in families of typically developing (TD) children. Our main aim was to study these relations in families of children with Down syndrome (DS), who in past research reported increased parental stress and permissive parenting. Method: Our sample included 100 parents of children…

Background: Views can be collected from individuals (self-report) or others on their behalf (proxy-report). Objective: We aimed to review the literature on methods and statistical approaches used to evaluate observer versus self-report responses from individuals with intellectual disability or Down syndrome. Methods: A series of key questions…

Purpose: Children with Down syndrome (DS) have multiple difficulties in gait pattern. So, the effect of the activity level and speed on the gait coordination and variability was investigated. Methods: In this case-control observational study, 24 participants in three groups of active and non-active children with DS, and the control group without…

Background: People with Down syndrome (DS) have a high risk for Alzheimer's disease (AD). Identifying resiliency factors for AD is of critical importance to the DS community. Method: Participants were 63 adults with DS. Measures included amyloid-beta PET scans (amyloid age), National Task Group-Early Detection Screen for Dementia (NTG-EDSD), and…

Background: The accuracy of the National Task Group-Early Detection Screen for Dementia (NTG-EDSD) was evaluated in a sample of 185 adults with Down syndrome (DS), emphasizing 'mild cognitive impairment (MCI-DS)'. Method: Knowledgeable informants were interviewed with the NTG-EDSD, and findings were compared to an independent dementia status…

Background: This study examines recent trends in the age-at-death disparity between adults with and without intellectual and/or developmental disabilities in the United States. Method: Data were from the 2005-2017 U.S. death certificates. Average age at death was compared between adults whose death certificate did or did not report an intellectual…

Background: Down syndrome is the most common liveborn genetic condition. However, there are no surveys measuring societal services and supports for people with Down syndrome. We developed a questionnaire so that initiatives could be targeted towards countries most in need of assistance. Method: We formed a geographically diverse group of…