RNA-binding proteins balance brain function in health and disease.

Posttranscriptional gene expression including splicing, RNA transport, translation, and RNA decay provides an important regulatory layer in many if not all molecular pathways. Research in the last decades has positioned RNA-binding proteins (RBPs) right in the center of posttranscriptional gene regulation. Here, we propose interdependent networks of RBPs to regulate complex pathways within the central nervous system (CNS). These are involved in multiple aspects of neuronal development and functioning, including higher cognition. Therefore, it is not sufficient to unravel the individual contribution of a single RBP and its consequences but rather to study and understand the tight interplay between different RBPs. In this review, we summarize recent findings in the field of RBP biology and discuss the complex interplay between different RBPs. Second, we emphasize the underlying dynamics within an RBP network and how this might regulate key processes such as neurogenesis, synaptic transmission, and synaptic plasticity. Importantly, we envision that dysfunction of specific RBPs could lead to perturbation within the RBP network. This would have direct and indirect (compensatory) effects in mRNA binding and translational control leading to global changes in cellular expression programs in general and in synaptic plasticity in particular. Therefore, we focus on RBP dysfunction and how this might cause neuropsychiatric and neurodegenerative disorders. Based on recent findings, we propose that alterations in the entire regulatory RBP network might account for phenotypic dysfunctions observed in complex diseases including neurodegeneration, epilepsy, and autism spectrum disorders.

De novo and bi-allelic variants in AP1G1 cause neurodevelopmental disorder with developmental delay, intellectual disability, and epilepsy.

Adaptor protein (AP) complexes mediate selective intracellular vesicular trafficking and polarized localization of somatodendritic proteins in neurons. Disease-causing alleles of various subunits of AP complexes have been implicated in several heritable human disorders, including intellectual disabilities (IDs). Here, we report two bi-allelic (c.737C>A [p.Pro246His] and c.1105A>G [p.Met369Val]) and eight de novo heterozygous variants (c.44G>A [p.Arg15Gln], c.103C>T [p.Arg35Trp], c.104G>A [p.Arg35Gln], c.229delC [p.Gln77Lys∗11], c.399_400del [p.Glu133Aspfs∗37], c.747G>T [p.Gln249His], c.928-2A>C [p.?], and c.2459C>G [p.Pro820Arg]) in AP1G1, encoding gamma-1 subunit of adaptor-related protein complex 1 (AP1γ1), associated with a neurodevelopmental disorder (NDD) characterized by mild to severe ID, epilepsy, and developmental delay in eleven families from different ethnicities. The AP1γ1-mediated adaptor complex is essential for the formation of clathrin-coated intracellular vesicles. In silico analysis and 3D protein modeling simulation predicted alteration of AP1γ1 protein folding for missense variants, which was consistent with the observed altered AP1γ1 levels in heterologous cells. Functional studies of the recessively inherited missense variants revealed no apparent impact on the interaction of AP1γ1 with other subunits of the AP-1 complex but rather showed to affect the endosome recycling pathway. Knocking out ap1g1 in zebrafish leads to severe morphological defect and lethality, which was significantly rescued by injection of wild-type AP1G1 mRNA and not by transcripts encoding the missense variants. Furthermore, microinjection of mRNAs with de novo missense variants in wild-type zebrafish resulted in severe developmental abnormalities and increased lethality. We conclude that de novo and bi-allelic variants in AP1G1 are associated with neurodevelopmental disorder in diverse populations.

Participation in Special Olympics reduces the rate for developing diabetes in adults with intellectual and developmental disabilities.

AIM: Adults with intellectual and developmental disabilities (IDD) have a significantly higher prevalence of Type 2 diabetes than the general population. Evidence that lifestyle and/or behavioural interventions, such as participation in Special Olympics, decreases the risk of developing diabetes in adults with IDD could help minimize health disparities and promote overall health in this population. METHODS: This was a 20-year retrospective cohort study of adults with IDD (30-39 years) in the province of Ontario, Canada, that compared hazard rates of diabetes among Special Olympics participants (n = 4145) to non-participants (n = 31,009) using administrative health databases housed at ICES. Using cox proportional hazard models, crude and adjusted hazard ratios were calculated for the association between the primary independent variable (Special Olympics participation status) and the dependent variable (incident diabetes cases). RESULTS: After controlling for other variables, the hazard ratio comparing rates for developing diabetes between Special Olympics participants and non-participants was 0.85. This represents a 15% reduction in the hazard among Special Olympics participants when followed for up to 20 years. This result was statistically significant and represents a small effect size. CONCLUSIONS: Special Olympics could be considered a complex intervention that promotes physical activity engagement through sport participation, health screenings, and the promotion of healthy eating habits through educational initiatives. This study provides evidence that Special Olympics participation decreases the rate for developing diabetes.

EEG Microstates as Markers for Cognitive Impairments in Fragile X Syndrome.

Fragile X syndrome (FXS) is one of the most common inherited causes of intellectual disabilities. While there is currently no cure for FXS, EEG is considered an important method to investigate the pathophysiology and evaluate behavioral and cognitive treatments. We conducted EEG microstate analysis to investigate resting brain dynamics in FXS participants. Resting-state recordings from 70 FXS participants and 71 chronological age-matched typically developing control (TDC) participants were used to derive microstates via modified k-means clustering. The occurrence, mean global field power (GFP), and global explained variance (GEV) of microstate C were significantly higher in the FXS group compared to the TDC group. The mean GFP was significantly negatively correlated with non-verbal IQ (NVIQ) in the FXS group, where lower NVIQ scores were associated with greater GFP. In addition, the occurrence, mean duration, mean GFP, and GEV of microstate D were significantly greater in the FXS group than the TDC group. The mean GFP and occurrence of microstate D were also correlated with individual alpha frequencies in the FXS group, where lower IAF frequencies accompanied greater microstate GFP and occurrence. Alterations in microstates C and D may be related to the two well-established cognitive characteristics of FXS, intellectual disabilities and attention impairments, suggesting that microstate parameters could serve as markers to study cognitive impairments and evaluate treatment outcomes in this population. Slowing of the alpha peak frequency and its correlation to microstate D parameters may suggest changes in thalamocortical dynamics in FXS, which could be specifically related to attention control. (250 words).

Management of patients with epilepsy and Intellectual disabilities in group homes vs. Family Homes: Insights into polypharmacy and seizure characteristics.

OBJECTIVES: This study aimed to investigate the differences in ASMs prescription, seizure characteristics and predictors of polypharmacy in patients with epilepsy and Intellectual disabilities (IDs) residing in group homes versus family homes. METHODS: This nine-year retrospective study analyzed patients with epilepsy and IDs who were admitted to the EMU, epilepsy clinics at LHSC and rehabilitation clinics for patients with IDs at Parkwood Institution. The study included individuals aged 16 years and older residing in either group homes or family homes. Data on demographics, epilepsy characteristics, and ASMs use were collected and analyzed using the Statistical Package for Social Sciences. The study utilized binary logistic regression to identify predictors of polypharmacy in patients with epilepsy and IDs. RESULTS: The study enrolled a total of 81 patients, of which 59.3 % resided in family homes. Group home residents were significantly older (41 vs. 24.5 years; p = 0.0001) and were prescribed more ASMs (3 vs. 2; p = 0.002). Specific ASMs were more common in group homes, including valproic acid (54.5 % vs. 25.0 %), lacosamide (54.5 % vs. 22.9 %), topiramate (33.3 % vs. 14.6 %), and phenytoin (30.3 % vs. 6.2 %). Admission to the EMU was more prevalent in group homes (93.9 % vs. 52.1 %; p = 0.0001). Living in a group home increased the risk of polypharmacy (OR = 10.293, p = 0.005), as did older epilepsy onset age (OR = 1.135, p = 0.031) and generalized or focal & generalized epilepsy (OR = 7.153, p = 0.032 and OR = 10.442, p = 0.025, respectively). SIGNIFICANCE: Our study identified notable differences in the demographic and clinical characteristics of patients with epilepsy and IDs living in group homes versus family homes. Age of epilepsy onset, EMU admissions, epilepsy types, and residency setting were significant predictors of polypharmacy. These findings highlight the need for personalized care strategies and increased awareness of the potential risks associated with polypharmacy.

Children and adolescents with severe motor and intellectual disabilities who underwent kidney transplantation.

BACKGROUND: Kidney transplantation (KT) in children and adolescents with severe motor and intellectual disabilities (SMID) has been a topic of controversy. A multicenter study in Japan showed that KT was not contraindicated for children with multiple handicaps, but no consensus has been reached on KT for patients with SMID. This study aimed to determine whether KT is a viable treatment option for children and adolescents with SMID. METHODS: A single-center, retrospective study was conducted on children and adolescents with SMID who underwent KT. SMID was defined based on Oshima's classification. Clinical information was collected through a review of medical records. RESULTS: Of 453 children and adolescents who underwent KT between 1983 and 2023 in our institution, six (1.3%) patients with SMID were identified. One patient received KT twice. All patients underwent living KT. Five patients used medical devices, including gastrostomy and a ventriculoperitoneal shunt, prior to KT. Perioperative complications, including hemothorax related to central venous catheter insertion, ventilator-associated pneumonia, and common iliac artery thrombosis requiring graftectomy, occurred in three patients. One patient required vesicostomy owing to refractory urinary tract infection. There was no significant difference in the graft survival rate between patients with SMID and those without SMID. One patient developed graft failure and died after selecting conservative kidney management. CONCLUSION: Our study showed a favorable graft survival in children and adolescents with SMID who underwent KT. Although careful perioperative management and continued medical care are required, KT may be a viable option for these patients.

Reading acquisition among students in Grades 1-3 with intellectual disabilities in Sweden.

This study investigates the reading performance of younger students with intellectual disabilities to gain insight into their needs in reading education. Participants were 428 students in Grades 1 to 3 in Sweden. They performed LegiLexi tests measuring pre-reading skills, decoding and reading comprehension based on the model of Simple View of Reading. Results demonstrate a great variation in reading acquisition among students. Some students are able to decode single words and read shorter texts with comprehension already in Grade 1. Other students still struggle with learning letters and developing phonological awareness in Grade 3. According to their longitudinal data over grades, results show that most students progress in pre-reading skills, decoding, and reading comprehension. Hence, assessing reading skills among students with intellectual disabilities in Grades 1-3 using tools aligned with the Simple View of Reading seems applicable and informative for teachers. This study underscores the significance of informed instructional practices for empowering these students in reading education.

The value of experts by experience in social domain supervision in the Netherlands: results from a 'mystery guests' project.

BACKGROUND: User involvement and participation in the supervision of the quality of care is an important topic for many healthcare inspectorates. It offers regulators an additional view on quality, increases the legitimacy and accountability of the inspectorate, empowers users and enhancing the public's trust in the inspectorate. To assess the accessibility of the local governmental social domain services the Joint Inspectorate Social Domain in the Netherlands worked together with people with intellectual disabilities performing as 'mystery guests' in an innovative project. This paper describes the findings of the evaluation of this project. METHODS: People with intellectual disabilities living at home on their own may need some help with daily activities such as administrative tasks, raising children, household tasks, managing debts or finding work. In the Netherlands they have to arrange this help at their municipality. The goal of this project was to find out how easily people with intellectual disabilities could get help from their municipality. The participants were equal partners with the JISD inspectors from the beginning: in constructing an inspection framework, in acting as mystery guest with a fictive support request, reported back the results by storytelling. RESULTS: The evaluation of the project showed that the JISD succeeded in their key aspect of the project: the goal to involve people with intellectual disabilities in a leading role from the beginning until the end. Their perspectives and preferences were the starting point of supervision. Pain points in accessibility became clear straight away and gave important insights for both inspectors as municipality professionals. Municipalities started to improve their services and evaluated the improvements with the clients. Furthermore, the impact on the participants themselves was also huge: they felt being taken seriously, valued and empowered. CONCLUSION: Involving people with intellectual disabilities as participants in all phases of supervision processes contributes to more relevant and useful outcomes, creates mutual understanding of perspectives, as affirmed by both municipalities and inspectors, and creates empowerment of the participants. Furthermore, it fits perfectly within the United Nation Convention on the rights of persons with disabilities and the current development of 'value driven regulation'.

The physical and psychosocial impact of a school-based running programme for adolescents with disabilities.

BACKGROUND: Adolescents with disabilities have fewer opportunities to participate in community-based fitness programmes. The purpose of this study was to examine the impact of a school-based running programme at a local middle school in Lebanon, Pennsylvania, on fitness and quality of life (QoL) in children with physical and cognitive disabilities in a life-skills classroom. METHODS: Nineteen adolescents with diagnosed disabilities including intellectual disability (ID), autism spectrum disorder and Down syndrome were recruited from three life-skills classrooms to participate in a school-based running programme. The programme was designed to be implemented two times/week for 6 weeks by classroom teachers/aides. Physical therapy faculty and students developed the programme and assisted with implementation. Each session lasted 30 min, consisting of a warm-up and cooldown, relay races, games and timed runs. Pre- and post-test measures included physiological cost index (PCI) and Paediatric Quality of Life Inventory™ (PedsQL™). Pre- and post-test data were compared using Wilcoxon signed rank tests. Each week participants also completed a training log to reflect on the activity for the day. RESULTS: Participants demonstrated significant improvements in PCI (P = 0.028) and the PedsQL™ (P = 0.008) following the running programme. CONCLUSIONS: Results of this study suggest that participation in a 6-week school-based running programme may improve fitness and QoL in adolescents with disabilities.

Supporting active engagement of adults with intellectual disabilities in lifestyle modification interventions: a realist evidence synthesis of what works, for whom, in what context and why.

BACKGROUND: Lifestyle modification interventions for adults with intellectual disabilities have had, to date, mixed effectiveness. This study aimed to understand how lifestyle modification interventions for adults with intellectual disabilities work, for whom they work and in what circumstances. METHODS: A realist evidence synthesis was conducted that incorporated input from adults with intellectual disabilities and expert researchers. Following the development of an initial programme theory based on key literature and input from people with lived experience and academics working in this field, five major databases (MEDLINE, EMBASE, CINAHL, PsycINFO and ASSIA) and clinical trial repositories were systematically searched. Data from 79 studies were synthesised to develop context, mechanism and outcome configurations (CMOCs). RESULTS: The contexts and mechanisms identified related to the ability of adults with intellectual disabilities to actively take part in the intervention, which in turn contributes to what works, for whom and in what circumstances. The included CMOCs related to support involvement, negotiating the balance between autonomy and behaviour change, fostering social connectedness and fun, accessibility and suitability of intervention strategies and delivery and broader behavioural pathways to lifestyle change. It is also essential to work with people with lived experiences when developing and evaluating interventions. CONCLUSIONS: Future lifestyle interventions research should be participatory in nature, and accessible data collection methods should also be explored as a way of including people with severe and profound intellectual disabilities in research. More emphasis should be given to the broader benefits of lifestyle change, such as opportunities for social interaction and connectedness.

Effects of a 12-week telehealth exercise intervention on gait speed and gait deviations in adults with Down syndrome.

BACKGROUND: Altered gait patterns and reduced walking speed are commonly reported in adults with Down syndrome (DS). Research on the effects of DS-specific exercise programmes on adults with DS is lacking. The purpose of this quasi-experimental study was to evaluate the changes in gait deviations and walking speed in adults with DS after a DS-specific exercise programme. METHODS: Twenty participants underwent a 12-week, DS-specific exercise programme in a telehealth format. Before and after the intervention, gait deviations were assessed with the Ranchos Los Amigos Observational Gait Analysis form, and comfortable walking speed was evaluated with the 4-m walk test. RESULTS: We observed increased comfortable walking speed and reduced gait deviations in the whole gait cycle in adults with DS after the intervention. There were fewer gait deviations during single-leg stance and swing-limb advancement and at the hip, knee and ankle joints after the 12-week exercise programme. CONCLUSIONS: Gait speed and observable gait impairments in adults with DS significantly improved following a 12-week telehealth exercise programme.

Ball possessions and game rhythm in basketball games involving players with and without intellectual impairments.

BACKGROUND: Ball possessions and game rhythm are promising variables to better understand teams' collective behaviour during a basketball game. However, the role of these variables is not well documented in teams with intellectual impairments (II). This study aimed to explore ball possession and game rhythm differences between II and non-II basketball games. METHODS: Data were obtained through video observations (53 II games) and the International Basketball Federation records (53 non-II games). RESULTS: Independent t-tests (P ≤ 0.05) revealed that the number of ball possessions was higher and game rhythm was faster in II games. Two-way repeated-measures analysis of variance (P ≤ 0.05) showed that ball possessions and game rhythm developed differently throughout the II games compared with the non-II games. CONCLUSIONS: The differences may be due to the decision-making, tactical and self-regulatory limitations of players with II. These limitations adequately explain why players with II respond differently to the environmental cues and monitor insufficiently their actions compared with players without II. Additionally, the higher number of ball possessions and the faster game rhythm in II games could be an indicator of more intuitive, and thus faster, game-related decision-making. In conclusion, the study provides further understanding of the role of cognition in basketball and contributes to better explain the differences between II and non-II games.

Unravelling the link between physical activity and peer social connectedness in young people with intellectual disabilities: a systematic review of quantitative studies.

BACKGROUND: There is limited understanding of the context surrounding physical activity (PA) of young people with intellectual disabilities (ID), which has an impact on the development of PA promotion programmes. Peer social connectedness seems to be a vital correlate to focus on, but has not been included in current studies examining the correlates and determinants of PA levels of young people with ID. This study aims to synthesise the evidence on (1) the social constructs researchers have used to conceptualise peer social connectedness in a PA context among young people with ID, (2) the measurement tools that have been used and (3) the relationship between PA and peer social connectedness in young people with ID. METHODS: The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Ovid MEDLINE, Ovid Embase, Web of Science, ERIC, CINAHL and PsycINFO were searched from 1 January 1996 up to, and including, July 2023 to identify English-language studies, which examined associations between PA and peer social connectedness in adolescents and young adults (13-24 years) with ID. Study quality was assessed using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields. RESULTS: Thirteen studies met the inclusion criteria and were included in the review. Ten peer social connectedness constructs and 18 measurement instruments were identified. Studies were predominantly focused on Special Olympics participants and unified activity formats. Participation in PA can increase social connectedness, but there is a lack of studies examining whether PA can also be increased by focusing on peer social connectedness in young people with ID. CONCLUSIONS: Results show that peer social connectedness is recognised as relevant to researchers developing and testing PA programmes for young people with ID.

Sexual support and education for adults with mild intellectual disabilities: a Delphi study on multiple perspectives.

BACKGROUND: Providing appropriate sexual support and education for adults with mild intellectual disabilities (IDs) is a source of considerable debate, resulting in diverse, non-funded and potentially adverse practices. This study aims to identify a consensus among experts regarding what conditions are conducive to successful sexual support and education for adults with mild IDs. METHODS: A Delphi study was conducted with 13 experts, including experts-by-experience, relatives, support staff, psychologists and sexologists. Qualitative data on the conditions for sexual support and education were gathered in the first round and thematically analysed. In the following three quantitative rounds, consensus was achieved using Likert-type response scales and participants' feedback. RESULTS: Round 1 resulted in 82 conditions on six themes: 'the necessary attitude', 'requirements', 'approach to delivering sexual support and education', 'appropriate providers', 'settings and timing' and 'effective collaboration with the network'. In the following three quantitative rounds, the experts reached consensus on 68 conditions distributed across the six themes. CONCLUSIONS: The six themes highlight conducive conditions for successful sexual support and education for adults with mild IDs, emphasising the significance of a safe and supportive environment, comprehensive educational programmes, and the promotion of autonomy and protection. The consensus-based findings have distinct implications for practice and future research.

Measurement protocols and determinants of peak oxygen consumption in adults with Down syndrome: a systematic review.

This systematic review aimed to provide an overview of test protocols used to measure peak oxygen uptake (VO2peak) in adults with Down syndrome (DS) and to determine how generalisable the outcomes are for the entire population of adults with DS by describing the sample characteristics of these studies and their impact on VO2peak. A literature search (PROSPERO CRD42022309560) was performed (18 July 2023) using the following databases: PubMed, CINAHL, APA PsycINFO, Web of Science, Embase and SPORTDiscus. For articles to be included, they had to be peer-reviewed pubications, reporting VO2peak or VO2max for individuals with DS separately, with a sample of n ≥ 5 and a mean age ≥18 years. Systematic reviews and meta-analyses were excluded but their reference lists were searched for additional papers to include. Studies were evaluated for risk of bias following the guidelines of Kmet et al. The results were summarised with frequency statistics. Forty-three studies were included in this systematic review. Sample sizes of included adults with DS ranged from n = 4-226, with a total of n = 1498 adults with DS being included. Most studies (29/43) used the same standardised maximal exercise treadmill protocol to measure VO2peak in adults with DS, and 33 out of 43 studies used at least one objective criterion to determine a valid maximal effort. Participants were predominantly male, under 40 years old, and overweight or obese. Additionally, the diversity of study samples was lacking or not reported. The most widely used, standardised, maximal exercise test treadmill protocol is recommended for future use in research and practice, including objective criteria to determine valid maximal effort. The current study samples are not representative of the population of adults with DS in terms of sex, age and diverse backgrounds and therefore likely overestimate VO2peak of this population.

Sleep in people with and without intellectual disabilities: a systematic review and meta-analysis.

BACKGROUND: Sleep problems are regularly reported in people with intellectual disabilities. Recent years have seen a substantial increase in studies comparing sleep in people with intellectual disabilities to control participants, with an increase in the use of validated, objective measures. Emerging patterns of differences in sleep time and sleep quality warrant pooled investigation. METHODS: A systematic search was conducted across three databases (Ovid Embase, PsycInfo and Medline) and returned all papers comparing sleep in people with intellectual disabilities to a control group, published since the last meta-analysis on the topic. A quality framework was employed to rate the risk of bias across studies. Separate meta-analyses of sleep duration and sleep quality were conducted. Subgrouping compared findings for those studies with participants with genetic syndromes or neurodevelopmental conditions and those with heterogeneous intellectual disability. RESULTS: Thirteen new papers were identified and combined with those from the previous meta-analysis to provide 34 papers in total. Quality of studies was generally rated highly, though sampling provided risk of bias and adaptive functioning was rarely measured. People with intellectual disability associated with genetic syndromes or neurodevelopmental conditions sleep for shorter time periods (standardised mean difference = .26) and experience worse sleep quality (standardised mean difference = .68) than their peers. People with intellectual disability of heterogeneous origin show no difference in sleep time but have poorer sleep quality. There was some evidence that age moderated these effects. CONCLUSIONS: People with intellectual disability have poorer sleep than those without. Subtle patterns suggest that aetiology of intellectual disability moderates the topography of these difficulties, with further work needed to differentiate common and distinct mechanisms across groups.

The relationship between the severity of intellectual and developmental disabilities (IDDs) in adults with IDDs and eating and drinking problems and nutritional status.

BACKGROUND: Adults with intellectual and developmental disabilities (IDDs) experience eating, drinking and swallowing problems, such as chewing problems, choking, gagging, coughing during eating, aspiration and rumination syndrome, which may lead to poor nutritional status. This study aimed to determine the relationship between IDD levels, eating, drinking and swallowing problems and nutritional status in adults with IDDs. METHODS: The sample consisted of 71 participants (37 men and 34 women) with a mean age of 22.5 ± 7 years (range 18-60 years). Professionals classified intellectual disability as mild, moderate or severe. The Screening Tool of Feeding Problems scale was applied to the caregivers of adults with IDDs to identify eating, drinking and swallowing problems. Dietary intake was assessed using a 24-h dietary recall and a food and nutrition photograph catalogue. The researchers measured body weight, height and middle upper arm circumference. Body mass index was calculated. Four body mass index categories were determined: underweight (<18.5 kg/m2 ), normal weight (18.5-24.9 kg/m2 ), overweight (25.0-29.9 kg/m2 ) and obese (≥30 kg/m2 ). Chi-squared tests were used to detect the relationship between IDD levels and eating and drinking problems, and analysis of variance tests were conducted to detect the relationship between IDD levels with anthropometric measurements and dietary intake. RESULTS: Participants had mild (42.3%; n = 30), moderate (29.6%; n = 21) or severe IDD (28.2%; n = 20). They were underweight (12.7%; n = 9), normal weight (59.2%; n = 42) or overweight and/or obese (28.2%; n = 20). Participants with severe IDD had significantly higher Screening Tool of Feeding Problems 'nutrition-related behaviour' and 'eating and drinking skill deficit problem' sub-scale scores than those with mild IDD. However, the groups had no significant difference in 'food refusal and selectivity' sub-scale scores. Participants with severe IDD also had anorexia prevalence similar to those with mild IDD. The groups did not significantly differ in anthropometric measurements, daily energy intake and macronutrient and micronutrient intake. CONCLUSIONS: While adults with severe IDD had more eating and drinking skill deficits (e.g. chewing problems and independent eating difficulties) and nutrition-related behaviour problems than those with mild IDD, the eating, drinking and swallowing problems, which may critically affect their food intake, were similar to adults with mild IDD. The anthropometric measurements and energy and nutrient intakes of adults with severe IDD were not significantly different from those with mild IDD consistently. Findings indicate that nutritional deficiencies and nutritional behaviour problems may be avoidable in adults with IDDs.

Stressful life events, post-traumatic stress disorder symptoms and mental health in individuals with intellectual disabilities: a scoping review.

BACKGROUND: Stressful life events are events that do not fulfil the A criterion of PTSD in the DSM-5(TR) but are perceived as negative by the person. There is an ongoing debate about the usefulness of the A criterion as a gate criterion for PTSD, and especially regarding which events qualify as traumatic or stressful life events. This debate is particularly important for individuals with intellectual disabilities (ID) or borderline intellectual functioning (BIF), as they seem to be more likely to experience traumatic and stressful life events than their peers without ID-BIF and appear to be more susceptible to the disruptive effects of these events. As a result, people with ID-BIF are more likely to develop mental health and behavioural problems. There is insufficient knowledge about how the relationship between stressful life events and PTSD symptoms should be interpreted, how traumatic and stressful life events are defined and distinguished in people with ID, and whether the A criterion should be broadened for individuals with ID-BIF. The aim of this scoping review was to understand stressful life events and their relationship with PTSD symptoms, other mental health and/or behavioural problems in individuals with ID-BIF. METHODS: The scoping review was conducted in accordance with the JBI methodology for scoping reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR). RESULTS: Thirty-eight studies were included. Five studies focused on stressful life events and PTSD symptoms. The other studies examined associations between stressful life events and other mental health and/or behavioural problems. Most of the studies did not clearly differentiate between stressful and traumatic events according to the A criterion of PTSD in the DSM-IV (TR) or DSM-5(TR). Of the six studies in which stressful life events were specified and could be distinguished from traumatic events, one found a positive association between PTSD symptoms and stressful life events and five showed weak to strong positive associations with other mental health and/or behavioural problems. CONCLUSIONS: PTSD symptoms following stressful life events in individuals with ID-BIF are underrepresented in the literature. The lack of a clear definition of stressful life events leads to a gap in the knowledge on whether and how stressful life events may lead to PTSD symptoms, other mental health and/or behavioural problems in individuals with ID-BIF. Therefore, no general conclusions or recommendations can be made regarding the appropriateness of the PTSD A criterion for individuals with ID-BIF. Further research is needed to establish the role of stressful life events in relation to PTSD symptoms and to inform the assessment and effective treatment in people with ID-BIF, as expert clinical experience studies suggest that broadening the PTSD A criterion should be considered for people with ID-BIF.

A systematic review of psychosocial interventions for people with intellectual disabilities and dementia.

OBJECTIVES: As the life expectancy of individuals with intellectual disabilities (ID) continues to increase, there is an increased risk of developing dementia. While psychosocial interventions are gaining prominence, evidence is limited for people with both dementia and ID. This review discusses the effectiveness of direct psychosocial interventions and adaptations to facilitate delivery within this population. METHODS: The review followed the PRISMA guidelines. Five electronic databases, grey literature, and reference lists of included articles were searched for relevant studies. 10 eligible studies were appraised and analysed by narrative synthesis. RESULTS: Ten distinct interventions were identified and categorised based on their purpose and delivery. All interventions were beneficial in improving a range of outcomes, though some studies were of low quality and most had small samples. Common adaptations included simplification of tasks and material, higher staff-to-client ratio, and alternative communication methods. CONCLUSION: There is emerging evidence for several psychosocial interventions for people with ID and dementia, though further research is required on effectiveness and generalisability. The adaptations discussed may guide implementation into routine care and contribute to current policies and guidelines on improving ID and dementia care.

Factors Influencing Palliative and End-of-Life Care for Adults with Intellectual Disabilities: A Scoping Review of Health and Care Workers' Experiences.

In developed countries, there has been an increase in the longevity of adults with intellectual disabilities. In the later stages of their lives, people with intellectual disability have specific needs in terms of palliative and end-of-life care that need to be better understood in order to offer appropriate care. This scoping review aimed to identify the main factors influencing the provision of palliative and end-of-life care from the perspective of health and care workers involved with adults with an intellectual disability at the end of life. Seven databases were systematically searched for relevant articles published between 2002 and 2022. NVivo qualitative research analysis software was used to conduct a thematic analysis of the 50 included studies. Three main factors were identified: the location of care and death, the involvement of the person with intellectual disability, and collaborative practices.