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Persons with intellectual disabilities (ID) may have difficulties providing reliable and valid accounts of their personal experiences through self-report measures. The aim of the current study was to systematically review the peer-reviewed research literature on the adaptations needed to develop “ID-inclusive” self-report measures. A search of PsycINFO, PubMed, Web of Science, and Google Scholar identified 49 studies that met inclusion criteria. A GRADE-CERQual assessment was performed to determine the level of confidence in the review findings. One hundred sixty-one recommendations for the development of “ID-inclusive” self-report measures were extracted from 49 included studies. Recommendations were presented in a GRADE-CERQual Summary of Findings table, according to a five-stage model of instrument development. This review offers much-needed practical guidance for clinicians and researchers on how to develop “ID-inclusive” self-report measures. Recommendations for future research about selfreport instrument development for use with people with ID are presented.

BackgroundPersons with intellectual disabilities (ID) may have difficulties providing reliable and valid accounts of their personal experiences through self-report measures. The aim of the current study was to systematically review the peer-reviewed research literature on the adaptations needed to develop ‘ID-inclusive’ self-report measures. MethodA search of PsycINFO, PubMed, Web of Science and Google Scholar identified 49 studies that met inclusion criteria. A GRADE-CERQual assessment was performed to determine the level of confidence in the review findings. Results161 recommendations for the development of ‘ID-inclusive’ self-report measures were extracted from 49 included studies. Recommendations were presented in a GRADE-CERQual Summary of Findings table, according to a 5-stage model of instrument development. ConclusionsThis review offers much-needed practical guidance for clinicians and researchers on how to develop ‘ID-inclusive’ self-report measures. Recommendations for future research about self-report instrument development for use with people with ID are presented.

Background Dementia is increasingly prevalent in people with severe/profound intellectual disabilities. However, early detection and diagnosis of dementia is complex in this population. This study aimed to identify observable dementia symptoms in adults with severe/profound intellectual disabilities in available literature. Method A systematic literature search was conducted in PubMed, PsycINFO and Web of Science with an exhaustive search string using a combination of search terms for severe/profound intellectual disabilities and dementia/ageing. Results Eleven studies met inclusion criteria. Cognitive decline, behavioural and psychological alterations, decline in activities of daily living as well as neurological and physical changes were found. Conclusions Only a very limited number of studies reported symptoms ascribed to dementia in adults with severe/profound intellectual disabilities. Given the complexity of signalling and diagnosing dementia, dedicated studies are required to unravel the natural history of dementia in this population.

BACKGROUND: The ageing of people with intellectual disability, accompanied with consequences like dementia, challenges intellectual disability-care staff and creates a need for supporting methods, with Dementia Care Mapping (DCM) as a promising possibility. This study examined the effect of DCM on the quality of life of older people with intellectual disability.METHODS: We performed a quasi-experimental study in 23 group homes for older people with intellectual disability in the Netherlands, comparing DCM (n = 113) with care-as-usual (CAU; n = 111). Using three measures, we assessed the staff-reported quality of life of older people with intellectual disability.RESULTS: DCM achieved no significantly better or worse quality of life than CAU. Effect sizes varied from 0.01 to -0.22. Adjustments for covariates and restriction of analyses to people with dementia yielded similar results.CONCLUSION: The finding that DCM does not increase quality of life of older people with intellectual disability contradicts previous findings and deserves further study.

Introduction: As opposed to studies focusing on staffs’ attributions of challenging behavior (CB), relatively few studies have looked at how people with intellectual disabilities (ID) attribute such behaviors themselves, and a systematic overview is currently lacking. The aim of this review was to synthesize the evidence from qualitative studies on the attributions people with ID have concerning their own or other clients’ CB.Methods: A systematic literature search was conducted in Embase, Medline Ovid, Web of science, Cochrane CENTRAL, PsychINFO Ovid, and Google Scholar. Studies were included if they focused on people with ID who report on attributions of their own or other clients’ actual CB. The methodological quality of the studies was assessed using the Critical Appraisal Skills Programme (CASP) checklist.Result: A total of 10 studies were included. Three main types of factors subdivided in 13 sub-types were reported by clients as potential causes of CB: interpersonal factors (1 support staff, 2 other clients, 3 general, 4 life history), environmental factors (1 ward, 2 social exclusion, 3 situational factors) and intrapersonal factors (1 syndrome or diagnosis, 2 medical or physical symptoms, 3 psychological reasons, 4 emotions and feelings, 5 coping, 6 other).Conclusions: This thematic synthesis shows that clients with ID report a diverse range of attributions regarding their own or other clients’ CB. This spectrum can be used as a framework for interpreting CB and for the development of appropriate support systems for people with ID demonstrating CB.

Background Psychiatric disorders, such as depression and anxiety, are commonly associated with epilepsy in the general population, but the relationship between psychiatric disorders and epilepsy among adults with intellectual disabilities is unclear. Aims To conduct a systematic review and meta-analysis to assess whether epilepsy is associated with an increased rate of psychiatric disorders in adults with intellectual disabilities. Method We included literature published between 1985 and 2020 from four databases, and hand-searched six relevant journals. We assessed risk of bias by using SIGN 50 and the Cochrane risk of bias tool. Several meta-analyses were carried out. Results We included 29 papers involving data on 9594 adults with intellectual disabilities, 3180 of whom had epilepsy and 6414 did not. Of the 11 controlled studies that compared the overall rate of psychiatric disorders between the epilepsy and non-epilepsy groups, seven did not show any significant inter-group difference. Meta-analysis was possible on pooled data from seven controlled studies, which did not show any significant inter-group difference in the overall rate of psychiatric disorders. The rates of psychotic disorders, depressive disorders and anxiety disorders were significantly higher in the non-epilepsy control groups compared with the epilepsy group, with effect sizes of 0.29, 0.47 and 0.58, respectively. Epilepsy-related factors did not show any definite association with psychiatric disorders. Conclusions It is difficult to pool data from such heterogeneous studies and draw any definitive conclusion because most studies lacked an appropriately matched control group, which will be required for future studies.

Background Previous systematic reviews showed no significant association between epilepsy and challenging behaviours in adults with intellectual disabilities. Aims To identify whether there is an association between epilepsy and challenging behaviour in adults with intellectual disabilities by carrying out a systematic review of published data. PROSPERO registration number: CRD42020178092. Method We searched five databases and hand-searched six journals. Two authors independently screened titles, abstracts and full articles using a standardised eligibility checklist. Several meta-analyses were carried out. Results The narrative analysis of data from 34 included articles (14 168 adults with intellectual disabilities, 4781 of whom also had epilepsy) showed no significant association between epilepsy and challenging behaviour. Meta-analysis was possible on data from 16 controlled studies. This showed no significant intergroup difference but after sensitivity analysis meta-analysis of 10 studies showed a significantly higher rate of overall challenging behaviour in the epilepsy group (effect size: 0.16) compared with the non-epilepsy group. Aggression and self-injurious behaviour both showed a statistically significant higher rate in the epilepsy group, with very small effect sizes (0.16 and 0.28 respectively). No significant intergroup difference was observed in the rate of stereotypy. Conclusions The findings are contradictory and must be interpreted with caution because of the difficulty in pooling data from varied studies, which is likely to introduce confounding. Where significant differences were found, effect sizes are small and may not be clinically significant, and there are major methodological flaws in the included studies, which should be addressed in future large-scale properly controlled studies.

Background: To optimise care and support for people with intellectual disabilities (ID), sharing and application of knowledge is a precondition. In healthcare in general, there is a body of knowledge on bridging the 'know-do-gap'. However, it is not known to what extent the identified barriers and facilitators to knowledge sharing and application also hold for the care and support of people with ID, due to its specific characteristics including long-term care. Therefore, we conducted a systematic review to identify which organisational factors are enabling and/or disabling in stimulating the sharing and application of knowledge in the care and support of people with ID. Method: A systematic review was conducted using five electronic databases of relevant articles published in English between January 2000 and December 2015. During each phase of selection and analysis a minimum of two independent reviewers assessed all articles according to PRISMA guidelines. Results: In total 2,256 articles were retrieved, of which 19 articles met our inclusion criteria. All organisational factors retrieved from these articles were categorised into three main clusters: (1) characteristics of the intervention (factors related to the tools and processes by which the method was implemented); (2) factors related to people (both at an individual and group level); and, (3) factors related to the organisational context (both material factors (office arrangements and ICT system, resources, time and organisation) and immaterial factors (training, staff, size of team). Conclusion: Overall analyses of the retrieved factors suggest that they are related to each other through the preconditional role of management (i.e., practice leadership) and the key role of professionals (i.e. (in)ability to fulfill new roles).

Introduction: The aging of the population with intellectual disability (ID), with associated conseqences as dementia, creates a need for evidence-based methods to support staff. Dementia Care Mapping (DCM) is perceived to be valuable in dementia care and promising in ID-care. The aim of this study was to evaluate the process of the first use of DCM in ID-care.Methods: DCM was used among older people with ID and care-staff in 12 group homes of six organisations. We obtained data on the first use of DCM in ID-care via focus-group discussions and face-to-face interviews with: care-staff (N = 24), managers (N = 10), behavioural specialists (N = 7), DCM-ID mappers (N = 12), and DCM-trainers (N = 2). We used the RE-AIM framework for a thematic process-analysis.Results: All available staff (94%) participated in DCM (reach). Regarding its efficacy, staff considered DCM valuable; it provided them new knowledge and skills. Participants intended to adopt DCM, by continuing and expanding its use in their organisations. DCM was implemented as intended, and strictly monitored and supported by DCM-trainers. As for maintenance, DCM was further tailored to ID-care and a version for individual ID-care settings was developed, both as standards for international use. To sustain the use of DCM in ID-care, a multidisciplinary, interorganisational learning network was established.Conclusion: DCM tailored to ID-care proved to be an appropriate and valuable method to support staff in their work with aging clients, and it allows for further implementation. This is a first step to obtain an evidence-based method in ID-care for older clients.

BACKGROUND: The ageing of people with intellectual disabilities, involving consequences like dementia, creates a need for methods to support care staff. One promising method is Dementia Care Mapping (DCM). This study examined the effect of DCM on job satisfaction and care skills of ID-care staff.METHODS: We performed a quasi-experimental study in 23 group homes for older people with intellectual disabilities in the Netherlands. Among staff, we assessed job satisfaction and care skills as primary outcomes and work experience measures as secondary outcomes (N = 227).RESULTS: Dementia Care Mapping achieved no significantly better effect than care as usual (CAU) for primary outcomes on job satisfaction (MWSS-HC) and working skills (P-CAT). Effect sizes varied from -0.18 to -0.66. We also found no differences for any of the secondary outcomes.CONCLUSION: Dementia Care Mapping does not increase job satisfaction and care skills of staff caring for older people with intellectual disabilities. This result differs from previous findings and deserves further study.

Introduction: As opposed to studies focusing on staffs’ attributions of challenging behavior (CB), relatively few studies have looked at how people with intellectual disabilities (ID) attribute such behaviors themselves, and a systematic overview is currently lacking. The aim of this review was to synthesize the evidence from qualitative studies on the attributions people with ID have concerning their own or other clients’ CB. Methods: A systematic literature search was conducted in Embase, Medline Ovid, Web of science, Cochrane CENTRAL, PsychINFO Ovid, and Google Scholar. Studies were included if they focused on people with ID who report on attributions of their own or other clients’ actual CB. The methodological quality of the studies was assessed using the Critical Appraisal Skills Programme (CASP) checklist. Result: A total of 10 studies were included. Three main types of factors subdivided in 13 sub-types were reported by clients as potential causes of CB: interpersonal factors (1 support staff, 2 other clients, 3 general, 4 life history), environmental factors (1 ward, 2 social exclusion, 3 situational factors) and intrapersonal factors (1 syndrome or diagnosis, 2 medical or physical symptoms, 3 psychological reasons, 4 emotions and feelings, 5 coping, 6 other). Conclusions: This thematic synthesis shows that clients with ID report a diverse range of attributions regarding their own or other clients’ CB. This spectrum can be used as a framework for interpreting CB and for the development of appropriate support systems for people with ID demonstrating CB.

BACKGROUND: Development of cognitive skills and social responsiveness are areas of concern in children with 22q11.2 deletion syndrome (22q11DS). It remains unclear if the cognitive and social profiles and trajectories are syndrome-specific or similar to those of children with idiopathic intellectual disabilities (IID) with or without comorbid autism spectrum disorder (ASD). AIMS AND METHODS: In this exploratory study, we examined and compared five broad cognitive abilities (BCAs) and the social responsiveness in primary school-aged children with 22q11DS (age 6-13, n = 21) and IQ-matched peers with IID (n = 21). The relative strengths and weaknesses of both groups were re-evaluated after 19 to 30 months. OUTCOMES AND RESULTS: Four different cognitive trajectories (i.e. absolute progress, stability, growing into deficit, and absolute decline) were demonstrated in both groups. Most children showed combined types of trajectories across BCAs resulting in a complex changing cognitive profile. In the 22q11DS group, social responsiveness problems increased, whereas no significant change was observed in the IID group. CONCLUSIONS AND IMPLICATIONS: Results reflect similar cognitive and social responsiveness profiles and trajectories across groups with children with 22q11DS being more at risk for growing into a social deficit. We recommend repeated monitoring of social skills development to adapt the environmental demands to the child's individual social capacities. ispartof: RESEARCH IN DEVELOPMENTAL DISABILITIES vol:81 pages:89-102 ispartof: location:United States status: published

Behavioural and Psychological Symptoms of Dementia (BPSD) are a core symptom of dementia and are associated with suffering, earlier institutionalization and accelerated cognitive decline for patients and increased caregiver burden. Despite the extremely high risk for Down syndrome (DS) individuals to develop dementia due to Alzheimer's disease (AD), BPSD have not been comprehensively assessed in the DS population. Due to the great variety of DS cohorts, diagnostic methodologies, sub-optimal scales, covariates and outcome measures, it is questionable whether BPSD have always been accurately assessed. However, accurate recognition of BPSD may increase awareness and understanding of these behavioural aberrations, thus enabling adaptive caregiving and, importantly, allowing for therapeutic interventions. Particular BPSD can be observed (long) before the clinical dementia diagnosis and could therefore serve as early indicators of those at risk, and provide a new, non-invasive way to monitor, or at least give an indication of, the complex progression to dementia in DS. Therefore, this review summarizes and evaluates the rather limited knowledge on BPSD in DS and highlights its importance and potential for daily clinical practice. (C) 2015 Elsevier Ltd. All rights reserved.

Extending previous research on the predictive value of large number discrimination, this study explored the role of infants' and toddlers' small number discrimination for numerical competencies in kindergarten (NCK). Although no significant relationship could be found between number discrimination in infancy (8 months, T1) and NCK (48 months, T3), the predictive value of toddlers' number discrimination (24 months, T2) for NCK could be demonstrated at least for some NCK. The finding that only toddlers' small number discrimination related to NCK raised thoughts about the task, age, set size, stability and development of number discrimination or other influencing factors. Future research should study all small set sizes (not only 1 vs. 3) and a broader range of NCK in a larger sample. Nevertheless, whereas infants' small number discrimination might be too early to predict NCK, performance in toddlerhood might be addressed in the future to establish a measure to detect at-risk mathematical development.

There is an increasing interest in screening instruments to detect intellectual disability (ID) in a quick and accurate way in mental health services as well as in the criminal justice system in order to provide appropriate support for people with undetected needs caused by ID. An instrument that has been proven to be useful in both settings is the Hayes Ability Screening Index (HASI). This study assessed the validity of the Dutch version of the HASI in persons with a substance abuse problem residing in mental health services, whether or not mandated to treatment by court order. The HASI was conducted along with the Wechsler Adult Intelligence Scale III as the criterion for validity to 90 participants. Additionally, the influence of psychiatric disorder and medication use on the HASI result was examined. A significant positive relationship was found between the two instruments, demonstrating convergent validity. Using a Receiver Operating Characteristic (ROC) curve analysis, the discriminative ability of the HASI with a cut-off score of 85 was found to be adequate, yielding in a good balance between sensitivity and specificity. The HASI was not distorted by the presence of the substance abuse problem or other psychiatric illnesses and medication did not influence the HASI scores in this study. These findings indicate that the HASI provides a time-efficient and resource-conscious way to detect ID in persons with a substance problem, thus addressing a critical need in mental health settings.

Although it has been proposed that inhibition is related to individual differences in mathematical achievement, it is not clear how it is related to specific aspects of mathematical skills, such as arithmetic fact retrieval. The present study therefore investigated the association between inhibition and arithmetic fact retrieval and further examined the unique role of inhibition in individual differences in arithmetic fact retrieval, in addition to numerical magnitude processing. We administered measures of cognitive inhibition (i.e., numerical and non-numerical stroop tasks) and a complementary, more ecologically valid measure of children’s inhibition in the classroom (i.e., teacher questionnaire), as well as numerical magnitude processing (i.e., symbolic and nonsymbolic numerical magnitude comparison) and arithmetic fact retrieval (i.e., two verification tasks) in 86 typically developing third graders. We used a correlation, a regression and a Bayesian analysis. This study failed to observe a significant association between inhibition and arithmetic fact retrieval. Consequently, our results did not reveal a unique contribution of inhibition to arithmetic fact retrieval in addition to numerical magnitude processing. On the other hand, symbolic numerical magnitude processing turned out to be a very powerful predictor of arithmetic fact retrieval, as indicated by both frequentist and Bayesian approaches. ispartof: Frontiers in Psychology vol:7 issue:JUN ispartof: location:Switzerland status: published

Problems encountered in epidemiologic health research in older adults with intellectual disabilities (ID) are how to recruit a large-scale sample of participants and how to measure a range of health variables in such a group. This cross-sectional study into healthy ageing started with founding a consort of three large care providers with a total client population of 2322 clients of 50 years and over, and two academic institutes. This consort made formal agreements about a research infrastructure and research themes: (1) physical activity and fitness, (2) nutrition and nutritional state, and (3) mood and anxiety. Subsequently, preparation was started by carefully reviewing and selecting instruments to measure a wide set of health variables to answer the research questions. Specific demands of these instruments were that they could be executed efficiently and accurately on-site in a large sample of participants and that the burden of these measurements for participants as well as their caregivers was as minimal as possible. Then, preparation was continued by designing and executing a thorough communication plan for clients, legal representatives and staff of the care providers, preceding the informed consent procedure. In this plan. which had a top-down structure, specific attention was given to personally informing and motivating of key stakeholders: the professional care givers. This preparation led to a recruitment of 1050 participants (45.2%) and to high participation rates in key parts of the assessment. A detailed description is provided about the recruitment and organization and the selected instruments. (C) 2011 Elsevier Ltd. All rights reserved.

Anomalies of chromosome number and structure are considered to be the most frequent cause of unexplained, non-syndromic developmental delay and mental retardation (DD/MR). High-resolution, genome-wide, array-based segmental aneusomy profiling has emerged as a highly sensitive technique for detecting pathogenic genomic imbalances. A review of 29 array-based studies of DD/MR patients showed that a yield of at least similar to 19% pathogenic aberrations is attainable in unselected, consecutive DD/MR referrals if array platforms with 30-70 kb median probe spacing are used as an initial genetic testing method. This corresponds to roughly twice the rate of classical cytogenetics. This raises the question whether chromosome banding studies, combined with targeted approaches, such as fluorescence in situ hybridisation for the detection of microdeletions, still hold substantial relevance for the clinical investigation of these patients. To address this question, we reviewed the outcome of cytogenetic studies in all 36,325 DD/MR referrals in the Netherlands during the period 1996-2005, a period before the advent of array-based genome investigation. We estimate that in a minimum of 0.78% of all referrals a balanced chromosomal rearrangement would have remained undetected by array-based investigation. These include familial rearrangements (0.48% of all referrals), de novo reciprocal translocations and inversions (0.23% of all referrals), de novo Robertsonian translocations (0.04% of all referrals), and 69,XXX triploidy (0.03% of all referrals). We conclude that karyotyping, following an initial array-based investigation, would give only a limited increase in the number of pathogenic abnormalities, i.e. 0.23% of all referrals with a de novo, apparently balanced, reciprocal translocation or inversion (assuming that all of these are pathogenic), and 0.03% of all referrals with 69,XXX triploidy. We propose that, because of its high diagnostic yield, high-resolution array-based genome investigation should be the first investigation performed in cases of DD/MR, detecting >99% of all pathogenic abnormalities. Performing both array investigation and karyotyping may not be a feasible option when laboratories are faced with a need to limit the number of genetic tests available for each patient. However, laboratories that supplant karyotyping by array-based investigation should be aware that, as shown here, a chromosomal abnormality, with possible pathogenic consequences for the patient or the family, will escape detection in about 0.78% of all DD/MR referrals. (C) 2009 Elsevier Masson SAS. All rights reserved.

Behavioural and Psychological Symptoms of Dementia (BPSD) are a core symptom of dementia and are associated with suffering, earlier institutionalization and accelerated cognitive decline for patients and increased caregiver burden. Despite the extremely high risk for Down syndrome (DS) individuals to develop dementia due to Alzheimer's disease (AD), BPSD have not been comprehensively assessed in the DS population. Due to the great variety of DS cohorts, diagnostic methodologies, sub-optimal scales, covariates and outcome measures, it is questionable whether BPSD have always been accurately assessed. However, accurate recognition of BPSD may increase awareness and understanding of these behavioural aberrations, thus enabling adaptive caregiving and, importantly, allowing for therapeutic interventions. Particular BPSD can be observed (long) before the clinical dementia diagnosis and could therefore serve as early indicators of those at risk, and provide a new, non-invasive way to monitor, or at least give an indication of, the complex progression to dementia in DS. Therefore, this review summarizes and evaluates the rather limited knowledge on BPSD in DS and highlights its importance and potential for daily clinical practice. (C) 2015 Elsevier Ltd. All rights reserved.

Background The transition of people with intellectual disability (ID) from care institutions to the community - according to Western policy - results in a shift of responsibility towards primary health care services. In order to provide optimal care to people with ID living in the community general practitioners need to be aware of the specific health problems of this patient category. The aim of this paper is to present an overview of recent studies on the specific health problems of people with ID, in particular on health problems of people with ID in the community, compared to those of the general population. Method To reliably compare health problems of individuals with and without ID, this review is limited to comparative research using a control group of individuals without ID. The focus of the review concentrates on international literature, published between 1995 and 2002. Results Most comparative research among people with ID presents higher prevalence rates for epilepsy, diseases of the skin, sensory loss and (increased risk of) fractures. These health problems are specific for people with ID, both in general and living in the community in particular. Conclusions there are only few studies focusing on health problems in people with ID in which a control group of individuals without ID is included. Most comparative studies on health problems in people with ID are based on comparison with reported prevalence rates of general health surveys.