Individuals with intellectual disabilities are at higher risk of undiagnosed or inadequately treated hearing loss. This situation requires easily accessible hearing screening, diagnostics and intervention programmes in the living environment, i.e., in nurseries, schools, workplaces and homes. However, a full audiometric assessment is not always possible in nonclinical settings. The multicentre cohort study HörGeist investigated the effectiveness, feasibility and costs of an outreach programme of repeated hearing screening, diagnostics, intervention and monitoring of children, adolescents and adults with intellectual disabilities in their living environment in comparison with an invitation-only programme comprising a control cohort in a clinical setting and with standard care. This paper reports on the HörGeist substudy of the outreach cohort, focusing on participants referred for 'external' diagnostics in clinical settings after failing on-site screening, and evaluating both referral uptake and outcomes. Because none of the 141 individuals in the control cohort provided informed consent to attend the programme in a clinical setting, our results pertain solely to the outcomes and feasibility within the outreach cohort. All of the 1053 participants in the outreach cohort who failed the hearing screening tests underwent full on-site audiometric assessment. Where on-site screening and/or diagnostics were not feasible, referrals to external medical institutions were provided. Participants who were referred to external diagnostics were tracked via telephone interviews using a questionnaire and asked about their utilisation and the outcome of diagnostics. In cases where referrals were not pursued, reasons for non-compliance were recorded. A referral for external diagnostics was received by 262 of the 1053 participants of the outreach cohort. Of these, 19 dropped out of the study. Of the 248 referrals received by the remaining 243 participants, 93 (37.5%) were attended and 155 (62.5%) were not. The main reasons for non-attendance were 'no attempt to arrange an appointment' (32.9%), 'refusal by caregivers' (23.2%) and 'refusal by participants' (18.1%). Approximately 4% did not receive an appointment for external diagnostics. Referral uptake declined with age, with uptake rates of 50.8% in young children, 41.3% in school-aged participants and 24.7% in adults. Telephone tracking of a subsample of 48 participants who primarily did not attend for external assessment led to further clinical diagnostics in eight cases (16.7%). In order to achieve an improvement in the hearing situation of people with intellectual disabilities, a screening, diagnostic and intervention programme in their living environment seems both feasible and beneficial. However, reliable assessment of the hearing status of the participants of such a programme requires education of participants, caregivers and medical professionals regarding its necessity and fostering of close collaboration with healthcare providers in outpatient and clinical settings. German Clinical Trials Register (DRKS-ID: DRKS00024804).
The closeness of the parent-child relationship may be a crucial factor in the development of all children, including those with intellectual disabilities. Previous research has suggested that there may be subgroup trajectories of mother-child closeness in families of children with intellectual disabilities during childhood. Our aim was to examine whether potential subgroup trajectories of mother-child closeness in families of children with intellectual disabilities exist and what factors influence identified trajectories. Data from 353 maternal primary caregivers who took part in three waves of the 1000 Families Study, over the course of 8 years, were analysed using growth mixture modelling. Mother-child closeness was measured using the Child Parent Relationship Scale at all three waves. Time-varying (maternal psychological distress, child behaviour and emotional problems, child prosocial behaviour) and time-invariant (child's level of communication skills, autism diagnosis) correlates of class membership and within-class trajectories were included in the analysis. The findings suggested a single trajectory of mother-child closeness, with observed heterogeneity accounted for by the covariates. Mother-child closeness on average remained consistent over time. Maternal psychological distress and an autism diagnosis were generally associated with reduced levels of mother-child closeness. The child's level of communication skills and child prosocial behaviour were associated with increased levels of closeness over time. Child behaviour and emotional problems were not associated with mother-child closeness. Further research using larger longitudinal population datasets is needed to explore whether there may be distinct trajectories of mother-child closeness in families of children with intellectual disabilities. The current findings suggest that supports for mother-child relationships might be targeted in families of children with lower levels of communication or prosocial behaviour skills, an additional autism diagnosis and when mothers are experiencing higher levels of psychological distress.
The Psychological Therapies Outcome Scale-Intellectual Disabilities-II (PTOS-ID-II) is a 29-item self-report measure developed to assess psychological distress and positive well-being in people with an intellectual disability. While initial validation demonstrated promising psychometric properties, further replication in a larger sample was needed, and incorporating insights gained from routine clinical use over the years since its initial implementation. A quantitative cross-sectional design was utilised to test the psychometric properties of the PTOS-ID-II using data collected from routine clinical practice from adults with intellectual disabilities (n = 879) accessing a community health service. Subsequent analyses included dimensionality reduction (via principal component analysis and confirmatory factor analysis), assessment of internal consistency, concurrent validity and receiver operating characteristic analysis. Analyses were guided by a primer on the development of health outcome measures. Exploration of the proposed factor structure of the PTOS-ID-II indicated that two of the items were problematic and subsequently removed. The new 27-item measure was rebranded 'the Outcomes for Wellbeing and Distress Scale' (OWLS-ID). Analysis of the measure identified and confirmed a three-component model: (1) Positive Well-being, (2) Emotional and Behavioural Discomfort and (3) Anxiety. Internal consistency was good to acceptable. Items related to Emotional and Behavioural Discomfort and Anxiety were combined to create a measure of psychological distress. Concurrent validity between distress as measured using the OWLS-ID and Brief Symptoms Inventory was strong. A cut of 11.5 had acceptable sensitivity (0.85) and specificity (0.9). Analysis of missing data suggested that item acceptability was high. The OWLS-ID is one of the most comprehensively tested patient-reported outcome measures to date, which was developed specifically for individuals with an intellectual disability. Its implications for clinical practice and future research are discussed.
Early studies demonstrated a higher risk for SARS-CoV-2 virus infection and severe COVID-19 outcomes such as hospitalisation, intensive care unit admission and death among people with an intellectual disability or other chronic conditions. However, the extent to which COVID-19 vaccination has affected the risk of these outcomes remains unclear. We conducted a case-control study to examine the association between vaccination and SARS-CoV-2 virus infection risk in people with an intellectual disability and the general population. COVID-19 cases aged 19 years and older confirmed to be infected between 28 January 2020 and 31 December 2021 were obtained from the British Columbia (BC) COVID-19 Integrated Case List, and up to five controls were selected from the province's healthcare client registry matching on sex, age and residential region. COVID-19 vaccination status was determined using the province's immunisation registry. The Community Living BC (CLBC) Registry of supported adults was linked to identify the intellectual disability status of each case and control. Odds ratios (OR) and 95% confidence intervals (95% CI) were estimated using the conditional logistic regression model. Severe COVID-19 outcomes were ascertained using hospitalisation and death registry databases. Cox regression was used to estimate hazard ratios (HRs) and 95% CIs for the outcomes among COVID-19 cases with and without an intellectual disability. We adjusted for sex, age, residential area and comorbidities. CLBC-supported adults with an intellectual disability were less likely to contract SARS-CoV-2 virus (OR = 0.66, 95% CI 0.61-0.71), and the protective association was stronger when fully vaccinated (OR = 0.40, 95% CI 0.34-0.48). Once infected, adults with an intellectual disability had a higher risk for COVID-19-associated hospitalisation (HR = 1.96, 95% CI 1.60-2.39), ICU admission (HR = 1.61, 95% CI 1.10-2.36) and death (HR = 1.88, 95% CI 1.15-3.07). COVID-19 vaccination was effective in reducing the risk of SARS-CoV-2 virus infection among people with an intellectual disability. Safety measures such as prioritised vaccination are important steps for protecting vulnerable people with an intellectual disability from SARS-CoV-2 virus infection, especially as COVID-19 cases with an intellectual disability were more likely to suffer severe health outcomes.
Despite its health benefits, physical activity levels remain low in adults with intellectual disabilities. Efforts to promote engagement in activity are limited in part by a lack of appropriate assessment tools for evaluating activity levels in this population. This study aims to assess the feasibility of applying standard accelerometer wear protocols among adults with intellectual disabilities. This retrospective study included 28 adults with intellectual disabilities. Demographic and accelerometer wear and activity data were analysed via descriptive statistics. Paired sample t-tests were conducted to assess differences in activity intensities on weekdays versus weekend days. The majority (67.9%) of participants met standard wear time criteria. Participants engaged in an average of 19.51 min of moderate-to-vigorous physical activity (MVPA) and 602 min of sedentary behaviour per day. Engagement in light intensity physical activity and MVPA was higher on weekdays compared to weekends. Standard accelerometry protocols appear feasible for use in populations of adults with intellectual disabilities.
Family members' involvement in the care for their relative often continues after their relative has moved out of the family home. However, little is known about the needs of family members when collaborating specifically with support staff caring for their relative. This scoping review provides an overview of existing literature to inform future research. The review was conducted in accordance with the PRISMA for Scoping Review statement. Seven databases were systematically searched in April 2022 (with a final update in May 2025). Studies that were published in English in peer-reviewed journals and examined the needs and experiences of family members collaborating with support staff in residential care settings were considered for inclusion. The Mixed Methods Appraisal Tool was used to assess risk of bias and a thematic synthesis was conducted to analyse the data. Ten articles met the inclusion criteria. Four studies focused on family members' experiences following a relative's transition from institutional or hospital settings, one study on sibling-staff collaboration, one on the roles of adult siblings, one exploring family experiences during the COVID-19 pandemic, one on parental perceptions of communication, one on family experiences postabuse inquiry and one focused on collaboration within hospital settings. The studies involved relatives with severe (n = 1), mild, severe and profound (n = 1), severe to profound (n = 1) or profound intellectual disabilities (n = 3). Four did not mention the level of intellectual disability. The synthesis yielded four analytical themes: (1) complexities in building personal relationships amidst changing contexts (n = 8), (2) navigating how to address unmet needs and the vulnerability it exposes (n = 3), (3) a desire for partnership and recognition (n = 10) and (4) a desire for staff to uphold their relative's quality of life (n = 10). This review highlights key areas for future research, including how family characteristics, disability severity and living arrangement can influence needs and experiences when collaborating with support staff. Additionally, further insight is needed on what impacts the dynamic nature of family-staff relationships. Lastly, understanding the views and experiences of support staff regarding family involvement is important, as it can aid the development of collaboration that is sensitive to their specific needs.
To explore the association between 24-h movement behaviours and fundamental motor skills in children with intellectual disabilities using compositional data analyses and to investigate the 'dose-effect' characteristics of the reallocation between 24-h movement behaviours and fundamental motor skills. A cross-sectional study was conducted among 306 children with intellectual disabilities aged 6-10 years from 12 special education schools in Beijing and Jinan between 10 September 2023 and 27 March 2024. The ActiGraph GT3X+ accelerometer was used to estimate the amount of time spent in 24-h movement behaviours. The Test of Gross Motor Development-2 was applied to assess fundamental motor skills. The compositional isotemporal substitution was utilized to analyse the relationship between 24-h movement behaviours and fundamental motor skills. (1) After controlling the gender, age and intellectual disability level, MVPA of children with intellectual disabilities was positively associated with their FMS total score, locomotor skills and object control skills (βFMS = 7.70, βlocomotor = 3.68, βobject control = 4.01, all p < 0.01). Additionally, SB was negatively correlated with their FMS total score, locomotor skills and object control skills (βFMS = -5.40, βlocomotor = -2.00, βobject control = -3.39, all p < 0.01). (2) According to the 'dose-response' curves, the mutual substitution of MVPA and other movement behaviours had an asymmetric effect on FMS, while the mutual substitution of LPA and SB had a symmetrical effect on FMS among children with intellectual disabilities. Furthermore, it was demonstrated that replacing SB with MVPA had the best-improving effect on the FMS of children with intellectual disabilities. Special education school administrators, teachers, parents and guardians should consider 24-h movement behaviours as a whole and pay attention to their impact on children with intellectual disabilities. In the process of promoting FMS in children with intellectual disabilities, ensuring adequate sleep and trying to reallocate time from SB to MVPA and LPA may be effective methods.
Drawing on Darling and Steinberg's integrative model of parenting, this study investigated the influence of parental support (companionship and modelling) on the physical activity levels of children with intellectual disabilities, with a specific focus on the moderating role of different parenting styles. A cross-sectional survey was conducted using a convenience sample of 191 parents of children with ID in China. Data were collected via parental support scales, the short form of the International Physical Activity Questionnaire (IPAQ-S) and a parenting style questionnaire. Hierarchical regression analysis was employed to test the main effects of parental support, and the PROCESS macro (Model 1) with the bootstrap method was used to examine the moderating effects of parenting styles. Both parental companionship (B = 865.62, p < 0.001) and parental modelling (B = 829.79, p < 0.001) were significant positive predictors of children's physical activity levels. Moderating effect analyses revealed that a democratic parenting style significantly enhanced the positive effects of parental support. In contrast, an inconsistent parenting style significantly weakened the positive effect of parental modelling (Coeff = -579.22, p = 0.007). The interaction with parental companionship showed a similar negative trend but was marginally significant (p = 0.057), indicating a need for further verification. Other nondemocratic parenting styles (authoritarian, permissive and indulgent) showed no significant moderating effects. Parental support is a key predictor of physical activity in children with intellectual disabilities, but its effectiveness is significantly moderated by the family's parenting context. A democratic parenting style acts as a 'catalyst', optimizing the impact of supportive behaviours, whereas an inconsistent parenting style acts as an 'inhibitor', particularly weakening the effectiveness of role modelling. The findings suggest that health promotion interventions for this population should adopt a dual-focused strategy: guiding parents to provide specific support behaviours while simultaneously fostering a democratic and consistent parenting climate.
Individuals with intellectual disabilities (ID) are at an increased risk of developing dementia. Early detection is essential for providing appropriate support, yet identifying dementia-related changes is challenging due to pre-existing cognitive impairments. Informant-based adapted tools have been developed to support dementia screening in individuals with ID. Among those, the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) aims to assess behavioural and functional changes related to dementia. This study aimed to examine the associations between the DSQIID total scores, cognitive performance and demographic characteristics of adults with ID. This cross-sectional study included 322 individuals with ID (n Down syndrome [DS] = 55; n non-DS ID = 267). Behavioural and functional changes were assessed using the DSQIID, whereas cognitive functioning was measured with the Test for Severe Impairment (TSI), Brief Praxis Test (BPT) and a semantic verbal fluency task. Negative binomial regression analyses were conducted to explore associations between DSQIID total scores and selected demographic and cognitive variables. Age was significantly associated with behavioural dementia-related changes, as assessed by the DSQIID, whereas ID severity was not associated. Results further showed that participants with DS had significantly higher scores on the DSQIID compared to participants with ID without DS. Higher DSQIID scores were significantly associated with higher semantic verbal fluency performance. Our findings suggest that caregivers may more readily detect behavioural and functional changes in adults with ID who exhibit relatively good verbal capacities. This study underscores the elevated risk of dementia in adults with DS and highlights the importance of supporting caregivers in recognizing early signs of dementia in adults with ID who exhibit lower verbal capacities. The findings underscore the importance of monitoring behavioural, functional and cognitive changes over time. Further research is needed to explore the associations between reported dementia-related changes and the severity of ID.
Young adults with intellectual disability (ID) are increasingly attending college through inclusive post-secondary education (IPSE) programmes. However, little is known about their psychological experiences at college. The current study aimed to examine the role of belongingness, anxiety and depressive symptoms in predicting life satisfaction for college students with ID enrolled in IPSE programmes at 4-year American colleges and universities. College students with ID (n = 129) from 21 IPSE programmes across the United States completed an online survey reporting on mental health symptoms, belongingness and life satisfaction. Programme staff (n = 21) from each of the IPSE programmes also completed an online survey providing information about their programmes. Results of the study indicated that there were significant differences in life satisfaction and level of anxiety based on gender, residential status and access to mental health services. A hierarchical regression analysis revealed that belongingness was significantly associated with life satisfaction and accounted for 12.5% additional variance in life satisfaction, above and beyond the variance accounted for by race, ethnicity, residential status and mental health symptoms. This study provides information on the well-being of college students with ID attending IPSE programmes, indicating high rates of mental health symptoms along with the role played by their sense of belonging in relation to their reported life satisfaction.
Until recently, no diagnostic instrument was available to classify posttraumatic stress disorder (PTSD) in individuals with severe or moderate intellectual disability (SID). This study investigates the Diagnostic Interview Trauma and Stressors-Severe Intellectual Disability (DITS-SID), a caregiver-administered interview corresponding with DSM-5(TR) PTSD criteria for children ≤ 6 years. Interrater reliability and convergent and content validity were examined. The DITS-SID, Aberrant Behavior Checklist (ABC) and Child and Adolescent Trauma Screener 3-6 (KJTS 3-6) were administered to relatives and professional caregivers of 97 adults with SID. Interrater reliability was good to excellent. Convergent validity was supported by correlations with ABC and KJTS 3-6 scores. Content validity appeared good as adults who met PTSD symptom criteria had, on average, higher interference scores, higher DITS-SID atypical symptom scores and a greater number of experienced traumas and stressors. No association was found between meeting PTSD symptom criteria and PTSD criterion A. The DITS-SID appears feasible for classifying PTSD in adults with SID. Future research should evaluate its validity in children with SID.
People with Down syndrome (DS) have a strong genetic predisposition to Alzheimer's disease (AD). However, the clinical burden and associated risk factors in diverse, non-Western populations remain less understood. This study aimed to investigate the prevalence of dementia in Japanese adults with DS and to identify modifiable clinical factors associated with dementia. This cross-sectional multicentre study surveyed 133 adults with DS (mean age 50.1 years) residing in 45 welfare facilities across Japan in 2019. Dementia was diagnosed by a consensus panel of physicians using established criteria (DSM-5, ICD-10, DC-LD) after comprehensive assessments, including the Japanese version of the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID-J). Logistic regression analysis was performed to identify factors independently associated with dementia. Forty-six participants (34.6%) were diagnosed with dementia. The prevalence rose sharply with age: 0% in their 30s, 30.8% in their 40s, 31.6% in their 50s and 65.5% in their 60s. After adjusting for covariates, older age, female sex, dyslipidaemia and visual impairment were independently associated with dementia. This study, the largest of its kind in Asia, confirms a high prevalence of dementia in institutionalized Japanese adults with DS. Crucially, this study is the first to identify dyslipidaemia and visual impairment as independent and potentially modifiable risk factors in this population. These findings highlight tangible targets for clinical interventions aimed at mitigating dementia risk in people with DS.
Adults with intellectual disabilities (IDs), particularly those who reside in community living arrangements (CLAs), are at high risk for these chronic diseases. Sedentary behaviour (SB) is an emergent, independent risk factor for several chronic diseases including cardiovascular and metabolic conditions. SB may represent a potent behavioural target to mitigate chronic disease risk in adults with ID who live in CLAs. Limiting the development of interventions to address SB is a lack of understanding of device-estimated SB patterns. Also not clear are the individual-level determinants of SB in this high-risk group of CLA residents with ID. The current study sought to address these knowledge gaps. A cross-sectional observational study design was used to characterize SB patterns and individual-level determinants of SB in adults with ID living in CLAs. Thirty-eight adults from 24 different CLAs wore activPAL devices for 1 week to enable device estimates of SB. activPAL data were processed, and the study outcomes of daily time spent in SB, SB bout lengths, sedentary breaks and prolonged SB were generated. Participants also completed an online survey to assess individual factors, which included demographics, independence, programming and health status. Univariate statistics were used to describe SB patterns and logistic regression models were used to ascertain the association between individual factors and SB variables. On average, the sample were aged 44.79 years (SD = 14.9), and 60.53% were male. The sample were highly sedentary: 47.37% engaged in prolonged SB, the daily average time in SB was 7.46 h (SD = 2.18), and an average of 32.4 daily SB bouts (95% CI = 28.9, 35.9) lasted 17.7 min (95% CI = 13.8, 21.7). Participants requiring more assistance with ADLs were more likely to have longer uninterrupted sedentary bouts (95% CI = 0.169, 1.721; β = 0.945; p = 0.018) and total daily duration of SB (95% CI = 4.58, 20.21; β = 12.394; p = 0.003). Those with less than a high school education had sedentary bouts that were ~15 min longer (95% CI = 3.21, 25.69; p = 0.013). Adults with ID living in CLAs spent almost 8 h of their waking day in SB. Those with lower levels of independence and education were more likely to have higher levels of SB. CLAs may represent a critical opportunity for targeted, place-based interventions to reduce time spent in SB.
Adults with intellectual disability (ID) experience frailty up to 20 years earlier than the general population, potentially increasing their risk of age-related comorbidities and mortality at a younger age. This study investigates the relationship between frailty, assessed with the Intellectual Disability Frailty Index (ID-FI) and its Short Form, and all-cause mortality over 10 years in older adults with ID. Accurate mortality prediction may help identify high-risk individuals and assist in creating targeted interventions for adults with ID. Data from 982 participants aged ≥ 50 years (mean age = 61.6 ± 8 years) with borderline to profound ID were analysed over a 10-year follow-up within the Healthy Ageing and Intellectual Disabilities (HA-ID) cohort. Frailty was assessed using the 51-item ID-FI and the 17-item ID-FI Short Form, which measure frailty scores that can be classified into five categories: relatively fit, prefrail, mildly frail, moderately frail and severely frail. Cox proportional hazards models were used to assess the predictive validity of both indices for all-cause mortality. Of 982 study participants, 433 (44.1%) were deceased during 10-year follow-up. Higher frailty scores were significantly associated with increased mortality risk, independent of age, sex, level of ID and Down syndrome. Compared to relatively fit participants, the hazard ratios (HRs) for mortality for the ID-FI were as follows: 1.53 (95% CI = 1.14-2.05) for prefrail, 3.17 (95% CI = 2.31-4.36) for mildly frail, 5.37 (95% CI = 3.66-7.89) for moderately frail and 10.00 (95% CI = 6.49-15.43) for severely frail participants. A similar pattern was demonstrated for the ID-FI Short Form. Both indices demonstrated fair predictive accuracy (AUC = 0.72) for 10-year all-cause mortality. Both the ID-FI and ID-FI Short Form are predictive for 10-year mortality risk in adults with ID. Future research should investigate how frailty changes over time and develop strategies to improve care for adults with ID.
The transition from paediatric to adult healthcare is particularly challenging for adolescents with profound intellectual and multiple disabilities (PIMD) and their families. This study aims to identify factors that Dutch healthcare professionals perceived as relevant to successful implementation of transitional care for adolescents with PIMD. Semi-structured interviews were conducted with 20 professionals working in paediatric and adult healthcare. Data were analysed using directed content analysis, guided by Flottorp's checklist (2013) on preventing and enabling factors of improvements in healthcare. Transitional care approaches vary at interpersonal, organisational and environmental levels. Enabling factors were parental self-reliance and competencies, a holistic perspective, professional networks, continuity and coordination of care, flexibility to deviate from standards and guidance from nonmedical actors. Preventing factors were family burden and emotions, suboptimal information transfer, insufficient agenda-setting, shortages of expert physicians and legal and administrative challenges. Continuous parental involvement and appropriate financial funding were enabling. The provision of person-centred care was considered essential. Successful implementation of transitional care for adolescents with PIMD is a multifaceted process characterised by structural and personal challenges. Providing person-centred care increases the likelihood of appropriate transitional care in PIMD-care.
Obstructive sleep apnoea (OSA) is highly prevalent in people with intellectual disabilities, and when left untreated, negatively influences daily activities and social interactions. Polysomnography (PSG) remains the diagnostic gold standard but can be an obtrusive and strenuous endeavour in people with intellectual disabilities, related to factors such as communicative impairment, anxiety, challenging behaviour and sensory hypersensitivity. Alternative methods to assess OSA severity by estimating the apnoea-hypopnoea index (AHI) have been proposed, based on heart and respiration rate variability signals. These signals could potentially be obtained with less obtrusive monitoring devices. We investigated whether this approach is also suitable in people with intellectual disabilities. We analysed overnight PSG data from 73 participants with intellectual disabilities. AHI was predicted by an algorithm trained to use cardiorespiratory inputs (from electrocardiogram and respiratory induction plethysmography) to detect the occurrence of sleep-disordered breathing events and total sleep time. It was compared to the PSG-derived AHI by means of Spearman's correlation and intraclass correlation coefficients (ICC). The diagnostic capacity of the algorithm to differentiate between OSA severity groups was evaluated using Cohen's κ coefficient of agreement and accuracy, using near-boundary double labelling, with the following boundaries: 'no OR mild OSA' 2.4 ≤ AHI < 7.0, 'mild OR moderate OSA' 12.4 ≤ AHI < 17.4 and 'moderate OR severe OSA', 26.6 ≤ AHI < 35.2. The algorithm achieved a strong Spearman's correlation between the predicted and PSG-derived AHI of 0.76 (p < 0.001) and a moderate ICC of 0.74 (p < 0.001). Differentiation in OSA severity classes was done with a κ of 0.58 and accuracy of 68.5%, indicating a moderate level of agreement. We show the potential of determining the severity of OSA in people with intellectual disabilities by estimating AHI using an algorithm based on surrogate cardiorespiratory signals. This allows the development of less obtrusive diagnostic modalities focusing only on cardiorespiratory inputs to assess OSA severity.
Research has shown significant underdiagnoses in adults with intellectual disabilities, highlighting the need for objective health measurements to prevent overshadowing. Physical fitness, crucial for health and functioning, is consistently poor in this population, increasing the risk of adverse outcomes. Fitness tests are promising but to date lack specific reference values from large datasets for broader applicability. This study examines the feasibility of four physical fitness tests in two large European cohort studies, IDS-TILDA in Ireland and the HA-ID study in the Netherlands, to address barriers and improve inclusion in research and care. This study used data from IDS-TILDA (40+ years) and HA-ID (60+ years) cohort studies. Static balance was measured by the capability of maintaining three stances; muscle strength was measured as grip strength; muscular endurance was measured with the Five-Times Chair Stand; and cardiorespiratory fitness was measured with the Two-Minute Step Test. Reasons for non-compliance were documented. The feasibility of these tests and reasons for non-successful performance were described for the total group and across participant characteristics. The IDS-TILDA sample was younger than the HA-ID sample, with more participants being independent in mobility. All fitness tests showed moderate to good feasibility, except the Full-Tandem stance in the IDS-TILDA sample. Lower feasibility was found in adults with severe and profound intellectual disabilities, walking aids and wheelchair users. Key barriers for participation were physical limitations and difficulties understanding the task. This study showed overall moderate to good feasibility. Physical limitations and difficulties understanding the task were important barriers, emphasising the need for the person-centred approach taken by both studies. Feasibility for including standardised physical fitness assessments, with a person-centred approach, in large cohort studies is shown. Including physical fitness assessment is recommended to allow for comparability and combining of data for more knowledge on physical fitness in adults with intellectual disabilities.
Chronic hyponatraemia is highly prevalent in older adults and is associated with various adverse health outcomes; however, its prevalence among individuals with severe motor and intellectual disability (SMID) remains unclear. This study aimed to determine the prevalence of hyponatraemia in hospitalized patients with SMID and to identify potential contributing factors. We retrospectively analysed serum sodium (sNa) levels in patients with SMID admitted to our hospital. Hyponatraemia was defined as an sNa level < 135 mEq/L. Demographic and clinical data, including age, sex, body weight, nutritional management and medication status, were collected. Serum concentrations of antiseizure medications (ASMs) were evaluated in patients receiving these treatments. A total of 122 patients were included. The primary diagnoses were cerebral palsy (57.3%), sequelae of intracranial infection (11.4%), hypoxic encephalopathy (10.7%), drug-resistant epilepsy (9.0%), sequelae of intracranial haemorrhage (4.9%) and congenital disorders including chromosomal abnormalities (6.5%). Hyponatraemia was identified in 22 patients (18.0%). Epilepsy was present in 112 patients, and 93 were receiving ASM therapy. No significant association was observed between hyponatraemia and primary diagnosis. However, univariate analyses revealed that the use of multiple ASMs was significantly associated with hyponatraemia (p = 0.028). Multiple regression analysis demonstrated that higher serum levels of carbamazepine (p < 0.0001) and phenytoin (p = 0.0026) were significantly associated with lower sNa levels. In our hospital, 18% of patients with SMID exhibited hyponatraemia. Careful monitoring of serum sodium levels is warranted in patients with SMID and epilepsy treated with carbamazepine or phenytoin.
The validation of noninvasive markers for the early detection of Alzheimer's disease (AD) in Down syndrome (DS) is a crucial goal within this population. DS patients are characterised by their overall vulnerability and, particularly, by their high risk of developing AD due to genetic conditions. Considering this background, in this study, we analysed the benefits that a combination of markers might yield in such detection. Sixty-two participants (35 females, 27 males) with DS (age > 45 years) distributed in three groups (asymptomatic [ADS], prodromal [PDS] and dementia [DDS]) underwent clinical and neuropsychological evaluation, together with the assessment of brain volumetry, plasma (neurofilament light and p-tau217), genetic (APOE4) and EEG markers. Regression analyses demonstrated the key role of p-tau217 among the studied biomarkers. However, the inclusion of p-tau217 failed to produce any significant improvement in the diagnostic model based on verbal memory tasks. This model correctly classified 88.0% of the ADS patients, 75.0% of the PDS patients and 93.8% of the DDS patients. In addition, a strong correlation was observed between p-tau217, delta power, volumetric scores and memory performance. Our findings suggested that, even when controlling the effect of elevated p-tau217 levels, the role of memory markers is essential to assist in AD diagnosis within the DS population. The combination of cognitive and plasma markers for the detection of prodromal AD cases in DS appeared to be highly effective. This is especially relevant after the recent FDA's approval of plasma markers such as ptau-217 for the diagnosis of AD.
Children with intellectual disabilities display fewer prosocial behaviours and increased behavioural and emotional problems compared to children without intellectual disabilities. Mother-child closeness may be an important factor in improving behavioural and emotional outcomes in children with intellectual disabilities over time. We aimed to examine the covarying relationship between mother-child closeness and child externalising and internalising behaviour problems, and child prosocial behaviour, respectively, over time. Parallel process growth modelling was conducted using data from 353 maternal primary caregivers who took part in three waves of the 1000 Families Study. Mother-child closeness was measured at each wave using the Child-Parent Relationship Scale. Child behavioural and emotional outcomes were measured using the Strengths and Difficulties Questionnaire. We controlled for time-varying and time-invariant covariates including the child's level of communication skills, autism diagnosis, maternal psychological distress and family economic adversity. The trajectory of mother-child closeness remained relatively stable across the three waves. After controlling for covariates, the trajectories of mother-child closeness and child prosocial behaviour significantly covaried. However, the trajectory of mother-child closeness did not significantly covary with the trajectory of either child internalising or externalising behaviour problems. Interventions aiming to improve child prosocial behaviour and/or mother-child closeness in families of children with intellectual disabilities may benefit from considering the relationship between mother-child closeness and child prosocial behaviour. Findings highlight the need for additional research to understand the relationship between these factors and further examine underlying individual differences in these families.