Journal of Intellectual Disability Research最新文献

Background: 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.

Methods: Thirty-one adolescent or adult-aged participants with mild or moderate ID were randomised into a DVD or control group exercise intervention. Participants were given autonomy to choose what type of PA modality from the intervention they would like to participate in. Caregiver support during the PA was also measured.

Results: The two-way repeated-measures MANOVA demonstrated that the intervention DVD group was statistically significant, with a large effect size in PA minutes (P = 0.014, ηP² = 0.236) and rate of perceived exertion (P = 0.002, ηP² = 0.342) compared with the control group.

Conclusions: The findings demonstrated that using an adapted DVD increased PA minutes and the rate of perceived exertion without high levels of caregiver support.

Background: 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.

Methods: This study is a nationwide cohort study, including 65 293 persons with ID and 659 723 persons in an age- and sex-matched reference group without ID. Incidence rates for T2DM were calculated and Cox proportional regression models were used to estimate adjusted hazard ratios (aHRs) for the association between ID and T2DM. Follow-up began from the 1 January 1977 (when T2DM data were available), participants' 22nd birthday or from the date the participants immigrated to Denmark, whichever came last and continued until the onset of T2DM, emigration, death or end of follow-up (31 December 2021), whichever came first.

Results: Persons with ID had more than double risk of T2DM compared with the reference group [aHR = 2.15, 95% confidence interval (CI): 2.09-2.20]. The strongest associations were found among women, persons born between 1980 and 1999 and among persons with mild ID.

Conclusions: Persons with ID have an increased risk of T2DM. This knowledge is important in relation to the development and prioritising of preventive initiatives among persons with ID in the healthcare sector. Future research should focus on the underlying mechanisms that can explain the possible association between ID and T2DM as it allows a more targeted prevention strategy.

Background: 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.

Methods: Parents of children with DS were a convenience sample recruited through the special education schools of Shandong Province in China. The Chinese version of the Children's Sleep Habits Questionnaire was applied to assess the sleep problems of children with DS.

Results: Parents of 334 children with DS reported the average sleep duration was 9.7 (9.3-10.2) hours per night, and 62.0% of children with DS were reported sleeping less than 10 h per night. Additionally, the total prevalence rate of sleep problems among children with DS was 69.8%. Sleep-disordered breathing (59.2%), sleep duration (33.8%) and bedtime resistance (32.0%) were the three most commonly reported sleeping problems. Younger children with DS (age 6-8 years) had severe problems with bedtime resistance, sleep anxiety and parasomnias than older children with DS (age 9-12 years) (all P < 0.05).

Conclusion: Sleep problems are prominent among children with DS in northern China and are worthy of attention. Caregivers and health professionals should raise awareness of sleep problems in this group of children and implement targeted interventions to improve their sleep quality as early as possible.

Background: 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.

Methods: Qualitative study involving individual semi-structured interviews with 16 people with, or carers of people with, a fragile X-associated condition (n = 4 adult premutation carriers; n = 12 parents/carers of children/adults), who participated in at least one of three online peer support programmes: educational webinars, Facebook discussion group and small peer group sessions via Zoom. Reflexive thematic analysis was used to develop themes.

Results: Three overarching themes relating to experiences were as follows: (1) uncertainty and value of shared experiences, (2) support navigating healthcare, (3) advantages being online, but still a place for in-person events. Educational webinars were perceived to be a valuable source of information about fragile X-associated conditions although people had variable information needs. Facebook discussion groups enabled people to connect with others, although participants expressed some competing preferences for how the groups were organised. Zoom peer group sessions were perceived to help participants feel supported by others, but that consistency in organisation was important.

Conclusions: Online peer support programmes were perceived to be beneficial, bridging informational gaps and facilitating social connection. However, participants believed there was still a place for in-person events, some felt educational webinars did not always meet their needs and some had privacy concerns.

Background: 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.

Methods: The sample consisted of 46 children divided into three groups: deletion (n = 10), maternal uniparental disomy (mUPD) (n = 13) and control (n = 23). The protocol included the Facially Expressed Emotion Labeling and the Deusto-e-Motion 1.0.

Results: The control group recognised facial emotions more accurately and quickly in both non-contextualised and contextualised scenarios than children with PWS, regardless of genetic subtype. Despite no differences being detected between PWS subtypes when non-contextualised scenarios were analysed, in contextualised situations, a longer reaction time was observed in children with the mUPD subtype.

Conclusions: This is the first study to assess the ability to recognise emotional facial expressions in contextualised situations among PWS subtypes and a control group. The findings suggest that some of the social cognitive deficits evidenced in children with mUPD PWS may be similar to those in autism spectrum disorder.

Background: 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.

Methods: Analyses were conducted on data from 122 children aged 7-15 years old with diagnoses of both ADHD and ID enrolled in the Hyperactivity and Special Educational Needs trial. Parents and teachers completed ratings of ADHD symptoms on the Aberrant Behavior Checklist (ABC) hyperactivity subscale and the revised Conners' Rating Scales hyperactivity scale and ADHD index. Cronbach's alpha was used to examine the reliability of these measures. Item response theory explores the performance of individual items. Multiple indicators, multiple causes models were used to test for measurement invariance by ID severity, co-occurring autism traits and child age.

Results: The reliability of parent and teacher reports of ADHD symptoms on the Conners' and ABC was acceptable across the range of ID. Item performance was generally good, and information was provided across the continuum of ADHD traits. Few items on either measure were non-invariant (i.e., item endorsement generally did not differ based on other child characteristics). When non-invariance was found, the effect was small.

Conclusions: Both the parent-reported and teacher-reported versions of the Conners' hyperactivity scale and ADHD index and the ABC hyperactivity subscale appear to function well in the current sample of children with co-occurring ADHD and ID.

Background: 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.

Methods: Correlates of inactivity among the general and ID populations were identified through a literature scoping review. Inactivity was measured using the RAPA and the IPAQ-SF. A multiple-imputation chained equation was used to impute missing data. Using Pearson chi-squared analyses, relationships between these correlates as well as covariates of age, sex, level of ID, body mass index (BMI) and aetiology, and RAPA and IPAQ-SF categories were explored. Logistic regression provided more detailed analyses. Results were summarised using the Systems of Sedentary Behaviour framework. Spearman correlations examined the IPAQ-SF and RAPA relationships.

Results: Three correlates for inactivity emerged from the IPAQ-SF and RAPA questionnaire. Up after 07:00 h was a correlate for both. Difficulty walking 100 yards and epilepsy were additional correlates of inactivity. Weak but significant correlations were seen between IPAQ-SF and RAPA scores.

Conclusions: High inactivity levels are present in adults with an ID. The IPAQ-SF and RAPA questionnaires are weakly correlated.

Background: 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.

Methods: We assessed drug burden in a cohort of sequential referrals to a national memory service for people with ID. All patients were referred for assessment of cognitive complaints (self-reported or caregiver-reported problems with memory or cognition). DBI was calculated individually for each participant, and the impact of aetiology of ID, level of ID, age, psychiatric/neurological comorbidities and diagnostic outcome on DBI scores was assessed.

Results: The study population was 58.6% female with a median age of 55 years and aetiology of ID was Down syndrome (DS) in 71.3%. Consensus diagnosis was Alzheimer's dementia in 40.2%, mild cognitive impairment in 29.9% and cognitively unimpaired from baseline in 25.3%. Medication use was high with 95.4% taking medications, with a median number of medications of 4 (interquartile range 4) and a rate of polypharmacy (≥5 medications) of 51.7%. Overall, 65.5% were exposed to sedative or anticholinergic medications with 39.1% exposed to a clinically significant DBI score >1. Those with psychiatric comorbidities, non-DS aetiology or epilepsy were significantly more likely to have a DBI score >1.

Conclusions: People with ID and incipient cognitive complaints have a high level of drug burden, which concerningly exceeds that of the general population.

Background: The increasing life expectancy of individuals with Down syndrome has led to a growing awareness of mid- and late-life conditions.

Methods: Based on the Disease Analyser database (IQVIA), this retrospective cohort study compared adults ≥18 years of age with Down syndrome (ICD-10: Q90) in general practices in Germany with a propensity score-matched cohort without Down syndrome. The outcome was the first diagnosis of a fracture within 5 years of the index date. The cumulative incidence of fractures over a 5-year period was presented using Kaplan-Meier curves. Univariable Cox regression analyses by age group and sex were performed to assess the association between Down syndrome and fractures.

Results: A total of 2547 individuals with Down syndrome and 12 735 individuals without Down syndrome were included in the study. A significantly higher cumulative fracture incidence within 5 years was observed in the age group 51-60 years (9.3% Down syndrome vs. 4.8% without Down syndrome, P = 0.003) as well as in the age group >60 years (20.3% Down syndrome vs. 8.6% without Down syndrome, P < 0.001) compared with the cohort without Down syndrome. Regression analysis showed a significant association between Down syndrome and fracture risk in women with Down syndrome aged 51-60 years (hazard ratio [HR] = 1.60; 95% confidence interval [CI]: 1.13-2.26), and in those aged 51-60 years (HR = 2.08; 95% CI: 1.27-3.41) and >60 years (HR = 2.98; 95% CI: 1.87-4.73)), but not in men. When comparing fractures in individuals with and without Down syndrome, shoulder and arm fractures were most common in the Down syndrome cohort.

Conclusion: The results of our study indicate a positive association between individuals with Down syndrome and subsequent fractures in women and those aged >50 years. Prevention of falls appears to be particularly important in these populations. However, future studies should clarify the extent to which socio-economic factors, such as housing, play a role in this context.