JOURNAL OF INTELLECTUAL DISABILITY RESEARCH

An exploration into self-reported inactivity behaviours of adults with an intellectual disability using physical activity questionnaires
Lynch L, McCarron M, McCallion P and Burke E
Inactivity is a correlate of adverse health. Adults with an intellectual disability (ID) are more inactive than the general population and often present with more complex health issues. Self-reported activity questionnaires such as the International Physical Activity Questionnaire - Short Form (IPAQ-SF) and Rapid Assessment of Physical Activity (RAPA) questionnaire are the predominant source of activity information because of their low cost, non-invasive nature, ease of administration and interpretation of results.
Drug burden index of people ageing with intellectual disability and cognitive complaints attending a specialist memory service
Vaughan RM, O'Dwyer M, Tyrrell J, Kennelly SP and McCarron M
Medications with sedative or anticholinergic properties should be prescribed with caution in those with cognitive complaints. This is particularly relevant in people ageing with an intellectual disability (ID). Higher drug burden index (DBI) scores are associated with increased frailty and falls and reduced quality of life in older people and increased risk of adverse effects (daytime somnolence, constipation) in those with ID. While previous studies have shown that the ID population has higher rates of drug burden and a higher propensity to be prescribed an antipsychotic than the general population, the degree of burden has not been assessed specifically in those with ID and cognitive complaints.
Psychometric properties of two ADHD rating scales used in children with ADHD and intellectual disability
Palmer M, Fang Z, Carter Leno V and Simonoff E
Attention deficit hyperactivity disorder (ADHD) is often present in people with intellectual disability (ID) and autism. However, few ADHD measures have been developed specifically for individuals with these conditions. There is little literature exploring how well ADHD measures are performing at picking up specific symptoms at the item level.
Sleep problems of children with Down syndrome in northern China
Zhang Y, Li LM, Ding JN, Liu Y and Yuan YQ
Limited research has looked at the present-day sleep problems among Chinese children with Down syndrome (DS). This study aimed to investigate the situation of the sleep problems of school-aged children with DS in northern China.
Age and sex-specific risk in fractures with Down syndrome in a retrospective case-control study from Germany
Krieg S, Krieg A and Kostev K
The increasing life expectancy of individuals with Down syndrome has led to a growing awareness of mid- and late-life conditions.
Prevalence of orthopaedic conditions in Rett syndrome: a systematic review and meta-analysis
Galán-Olleros M, González-Alguacil E, Soto-Insuga V, Vara-Arias MT, Ortiz-Cabrera NV, Egea-Gámez RM, García-Peñas JJ, Martínez-Caballero I and
Rett syndrome (RTT), a developmental disorder primarily affecting girls and linked to methyl-CpG binding protein-2 (MECP2) gene mutations, presents musculoskeletal abnormalities with varying prevalence across studies and age groups. Our aim was to delineate the prevalence of orthopaedic conditions in individuals with RTT.
Eating and feeding disorders in adults with intellectual developmental disorder with and without autism spectrum disorder
Bertelli MO, Paletti F, Piva Merli M, Hassiotis A, Bianco A and Lassi S
The present observational cross-sectional study aimed at investigating the prevalence of feeding and eating disorders (FEEDs) in adults with intellectual disability (ID)/intellectual developmental disorder (IDD) with or without autism spectrum disorder (ASD) and specific problem behaviours (PBs).
Development and evaluation of the Trauma Screener-Intellectual Disability: a post-traumatic stress disorder screening tool for adults with mild intellectual disability or borderline intellectual functioning
Versluis A, Schuengel C, Mevissen L, de Jongh A and Didden R
This study aimed to evaluate the validity and reliability of the adult self-report and proxy version of the Trauma Screener-Intellectual Disability (TS-ID) in adults with mild intellectual disability or borderline intellectual functioning (MID-BIF). An optimal cut-off value was determined for the ratio of specificity to sensitivity for predicting the diagnosis of post-traumatic stress disorder (PTSD).
High frequency of mitochondrial DNA rearrangements in the peripheral blood of adults with intellectual disability
Bulduk BK, Tortajada J, Torres-Egurrola L, Valiente-Pallejà A, Martínez-Leal R, Vilella E, Torrell H, Muntané G and Martorell L
Mitochondrial DNA (mtDNA) rearrangements are recognised factors in mitochondrial disorders and ageing, but their involvement in neurodevelopmental disorders, particularly intellectual disability (ID) and autism spectrum disorder (ASD), remains poorly understood. Previous studies have reported mitochondrial dysfunction in individuals with both ID and ASD. The aim of this study was to investigate the prevalence of large-scale mtDNA rearrangements in ID and ID with comorbid ASD (ID-ASD).
Digital motor intervention effects on motor performance of individuals with developmental disabilities: a systematic review
Corey J, Tsai JM, Mhadeshwar A, Srinivasan S and Bhat A
Individuals (i.e. children/young adults) with developmental disabilities (DDs) and intellectual disabilities (IDs) often display a variety of physical and motor impairments. It is well known that participation in motor activities can positively impact the development of children's cognitive and social skills. Recently, virtual and digital technologies (e.g. video conferencing applications, virtual reality and video gaming) have been increasingly used to promote better physical/motor outcomes. The efficacy of digital technologies in improving motor outcomes for those with DD/ID varies depending on the technology and population, and the comparative effects of various technologies are unknown. The aim of our study is to conduct a systematic review to comprehensively examine the quantitative and qualitative results of current studies reporting the efficacy of digitally based motor interventions on motor outcomes in individuals with DD/ID.
The needs of family members of people with severe or profound intellectual disabilities when collaborating with healthcare professionals: a systematic review
van Beurden K, Vereijken FR, Frielink N and Embregts PJCM
Collaboration with healthcare professionals is crucial in arranging necessary lifelong support for people with intellectual disabilities. However, family members often face challenges when collaborating with healthcare professionals. Family members of people with severe and profound intellectual disabilities often encounter many professionals due to medical needs and the severity of their disability. Therefore, providing a comprehensive overview of existing literature on the needs and experiences of family members of relatives with severe or profound intellectual disabilities when collaborating with healthcare professionals is needed to provide insight into how to stimulate and support collaboration.
The influence of assistance in home-based exercise programmes for individuals with intellectual disabilities
Noerr KL and Swinford R
Regular physical activity (PA) decreases the risk of comorbidities associated with a sedentary lifestyle in individuals with intellectual disabilities (IDs). They also may experience additional barriers that may prevent PA, including access, proper instruction and support. At-home PA programming is a feasible alternative to long-term adherence. This study aimed to determine (1) how an at-home DVD programme affects PA adherence and (2) the extent to which caregiver support influences PA.
Comparing self-report medication data from a longitudinal study on intellectual disability and national dispensing records
Gorman A, Odalović M, McCallion P, Paul A, Burke É, MacLachlan M, McCarron M, Henman MC, Moran M, O'Connell J, Shankar R, Ryan C and O'Dwyer M
Medication data are a valuable resource in epidemiological studies. As the most common data collection method of medication data is self-report, it is important to understand the accuracy of this in comparison with other methods such as dispensing records. The aim of this study was to compare the agreement between two different sources of medication data of older adults with intellectual disability (ID).
Pay Attention to Hypertension (PAtH): Findings from a cardiovascular health promotion intervention for adults with intellectual disabilities participating in Special Olympics programming
Ponce-Alcala RE, Cuerrier A, Sanzone L, Delmas T, Roberge K and Van Hulst A
Cardiovascular disease (CVD) affects adults globally. People with intellectual disabilities (PWID) may be at higher risk of CVD and associated risk factors (e.g. obesity, hypertension, and diabetes). We developed Pay Attention to Hypertension (PAtH), a cardiovascular health promotion intervention, and tested its impact on changes in blood pressure (BP), lifestyle behaviours and health-related empowerment among PWID.
Inpatient hospitalisations for patients with Prader-Willi syndrome: a 2019-2021 National Inpatient Sample analysis
Luccarelli J, Strong TV and McCoy TH
Prader-Willi syndrome (PWS) is a genetic disorder characterised by hyperphagia, intellectual disability and increased propensity to a range of medical disorders. To better characterise the clinical presentation of PWS across the lifespan, this study reports on the demographics and clinical diagnosis of individuals with PWS hospitalised in the United States.
A comprehensive overview of neuropsychiatric symptoms in adolescents with 22q11.2 deletion syndrome
Selten I, Blok J, Boerma T, Djelantik AAAMJ, Houben M, Wijnen F, Zinkstok J, Vorstman JAS and Fiksinski AM
The 22q11.2 deletion syndrome (22q11DS) is associated with a variety of neuropsychiatric outcomes that vary across deletion carriers. We adopted a dimensional approach to provide a comprehensive overview of neuropsychiatric symptom expression in adolescents with 22q11DS and further our understanding of the observed phenotypical heterogeneity.
The risk of type 2-diabetes among persons with intellectual disability: a Danish population-based matched cohort study
Thorsted A, Lehn SF, Kofoed-Enevoldsen A, Andersen A, Heltberg A, Michelsen SI and Thygesen LC
Previous research shows that obesity, unhealthy eating, physical inactivity and a high use of psychotropic medications are prevalent among persons with intellectual disability (ID), which might increase the risk of type 2-diabetes (T2DM). This study aims to investigate: (1) whether persons with ID have an increased risk of T2DM compared with an age- and sex-matched reference group and (2) differences in T2DM risk by sex, birth year, ID inclusion diagnosis and ID severity.
The 26th SSBP Educational Day and International Research Symposium: Early Identification and Treatment of Genetic and Neurodevelopmental Disorders
'It's especially good just to know that you're not the only one': a qualitative study exploring experiences with online peer support programmes for the Fragile X community
Haber T, Davies L, Hinman RS, Bennell KL, Bruce W, Jewell L, Borda A and Lawford BJ
Accessing peer support can be difficult for people with, or carers of people with, inherited intellectual disabilities. One way to improve access is to provide services online, yet few studies have explored people's experiences with online peer support programmes. We aimed to explore experiences with such programmes for communities affected by fragile X-associated conditions.
Early identification and treatment of genetic and neurodevelopmental disorders
Winarni TI, Utari A, Maharani N, Sumekar TA, Sihombing NRB and Hagerman RJ
Comparative study of emotional facial expression recognition among Prader-Willi syndrome subtypes
Perosanz A, López-Paz JF, Amayra I, García M and Martínez O
Prader-Willi syndrome (PWS) is a congenital disease caused by a rare and generally non-inherited genetic disorder. The inability to recognise facial expressions of emotion is an apparent social cognition deficit in people diagnosed with PWS. The main objective of the present study is to compare the ability to recognise emotional facial expression, in both non-contextualised and contextualised scenarios, among the main subtypes of PWS and a control group.