ABSTRACT Background Depression is difficult to identify in individuals with intellectual disability (ID), partly due to the limited availability of screening tools adapted for this population. This study aimed to translate the Glasgow Depression Scale for People with a Learning Disability (GDS‐LD) into Swedish and to provide initial evidence regarding its psychometric properties. Methods The translation followed established forward–backward procedures, supplemented by expert review and user testing. Content validity was assessed through item review with four adults with ID. The Swedish GDS‐LD was administered to 26 adults with mild ID, including participants with and without clinically assessed depressive symptoms. Test–retest data were collected from 22 participants. Results The Swedish GDS‐LD demonstrated good internal consistency ( α = 0.90) and high test–retest reliability ( r = 0.93). All but two items showed acceptable item–total correlations (> 0.30). Participants with a higher clinically assessed likelihood of depression scored significantly higher on the GDS‐LD than comparison participants, supporting its ability to distinguish between groups. Exploratory analyses further suggested that the use of a total score may be appropriate. Conclusions The Swedish GDS‐LD demonstrated promising preliminary psychometric properties in this pilot sample of adults with mild intellectual disability. The findings support further evaluation in larger and more heterogeneous samples before conclusions can be drawn regarding its broader psychometric performance and clinical application.
ABSTRACT Background Intellectual disability (ID) constitutes a major neurodevelopmental disorder (NDD), arising from diverse genetic and environmental aetiologies. Fragile X syndrome (FXS), caused by CGG repeat expansion in the FMR1 gene, is one of the most common inherited causes of ID and autism. Aim In Morocco, FMR1 molecular screening data are currently not available. This study provides the first characterisation of FMR1 mutations in Moroccan patients with nonsyndromic ID (NS‐ID). Methods One hundred children and adolescents (75 boys and 25 girls) were tested using AmplideX PCR/CE FMR1 Kit based on fluorescent triplet‐primed PCR (TP‐PCR) and capillary electrophoresis (CE) to determine CGG repeat sizes. Results A total of 92% of individuals (23 females and 69 males) carried an FMR1 allele within the normal CGG repeat range (< 44 repeats), two of which were diagnosed with Klinefelter syndrome (KS). Two females (2%) presented intermediate alleles (45–54 repeats), both with 53 repeats. Six full‐mutation males (6%) were identified with CGG repeats > 200. Conclusion As the first molecular screening initiative targeting FXS in high‐risk patients, our results demonstrate the utility of testing in this population highlighting the importance of future multicentre studies.
ABSTRACT Background Out‐of‐home placement is an impactful measure to protect and care for children who cannot live with their birth parents due to unsafety. Children in families in which at least one parent and/or child has an intellectual disability are disproportionately represented among those placed in out‐of‐home care. The aim of this study was to investigate (1) which risk factors increase the likelihood of out‐of‐home placement and (2) whether a cumulation of multiple risk factors increases the likelihood of out‐of‐home placement within families with intellectual disabilities. Method Case files of 138 children between the ages of 0 and 18 from families with intellectual disabilities with a family supervision order were analysed using logistic regression. In 38% of these case files, the child was placed out of home (M = 9.85, SD = 5.61). Results The bivariate analyses showed that several child factors (being a girl, intellectual disabilities, judicial contact), one maltreatment factor (sexual abuse) and one child‐rearing factor (emotional overload) increased the likelihood of out‐of‐home placement. Only sexual abuse significantly contributed to a higher likelihood of out‐of‐home placement in the multivariate analysis. The data provided limited evidence for a cumulative effect of child risk factors, increasing the likelihood of an out‐of‐home placement. Conclusions Placement decisions are complex and sexual abuse of the child should be understood within a broader constellation of adversities within families with intellectual disabilities, requiring trauma‐informed systemic interventions.
ABSTRACT Background People with intellectual disability (ID) have a markedly lower life expectancy than the general population, with cancer being one of the most common causes of death. This systematic review aims to provide an overview of existing knowledge on cancer diagnostics among people with ID, including cancer screening, routes to cancer diagnosis and cancer stage. Method We systematically searched Embase, PubMed, CINAHL and PsycInfo for observational studies on cancer screening, routes to diagnosis, and cancer stage among people with ID published from 2000 onwards. Study selection and quality assessment were conducted independently by two authors. Results Twenty‐five register‐based studies met the inclusion criteria. Sixteen consistently reported lower cancer screening participation among people with ID. Three studies found that people with ID were less likely to be diagnosed through standardized, fast‐track pathways and more likely to be diagnosed following emergency hospital contacts. Across nine studies, people with ID were more often diagnosed at advanced or unknown cancer stage than those without ID. Conclusions People with ID experience substantial inequalities in cancer detection, including lower screening participation, less optimal diagnostic pathways and more frequent diagnosis at advanced or unknown stages. These disparities highlight the need for interventions targeting symptom recognition, diagnostic pathways and healthcare accessibility among people with ID.
ABSTRACT Background Angelman Syndrome (AS) is a rare neurodevelopmental disorder caused by the lack of expression of the UBE3A gene, which can result from abnormalities of the maternally inherited chromosome 15q11‐q13. The purpose of this study is to investigate the most common types of toileting problems in adults with AS and the associated factors of toileting problems in adults with AS. Method Data from participants with AS ( N = 40; aged 18–46 years) registered with the Global Angelman Registry, were divided into toileting problems and no toileting problems groups based on the presence or absence of 50% of the toileting behaviours recorded in the registry. Results It was found that 65% of the sample presented with toileting problems. A significant association between toileting problems and type of feeding during infancy, the use of signing and the use of single words, as a form of communication, were found. Feeding type and use of signing were analysed using a logistic regression and classified 95% of individuals in the sample. Conclusion The novel findings that this study adds are investigating toileting problems and associated factors of toileting problems in an adult sample of individuals diagnosed with AS. Little research has been conducted on toileting problems in adults with AS. The current study further adds to the small body of literature on toileting problems in adults with AS.
