Showing papers in "Journal of Intellectual Disability Research in 2004"

The concept of quality of life: what we know and do not know

Abstract: Background Over the past two decades the concept of quality of life (QOL) has increasingly become a focus for research and application in the fields of education/special education, health care (physical and behavioural), social services (disabilities and ageing), and families. Methods This article summarizes our current understanding of the construct of individual QOL as it pertains to persons with intellectual disabilities (ID). The article's three major sections discuss what we know, what we are beginning to understand, and what we still do not know about the QOL construct. Results We currently know the importance of the QOL construct as a service delivery principle, along with its current use and multidimensional nature. We are beginning to understand the importance of methodological pluralism in the assessment of QOL, the multiple uses of quality indicators, the predictors of assessed QOL, the effects of different data collection strategies, and the etic (universal) and emic (culture-bound) properties of the construct. We have yet to understand fully the use of QOL-related outcomes in programme change, how to best evaluate the outcomes of QOL-related services, and how to use the concept of QOL to impact public and disability reform. Conclusion The article concludes with a brief discussion of future challenges related to demonstrating the concept's social validity and positive impact on the lives of persons with ID.

Coping with social stigma: people with intellectual disabilities moving from institutions and family home

Abstract: Background Social stigma and its impact on the life opportunities and emotional well-being of people with intellectual disabilities (IDs) are a subject of both practical and theoretical importance. The disability movement and evolving theories of self, now point to individuals’ ability to develop positive identities and to challenge stigmatizing views and social norms. Method This paper presents findings from a phenomenological study of 10 individuals making the transition from their family home to live more independently and 18 individuals moving from a long-stay hospital to live in community housing. It builds on an earlier data set obtained from people living at home with their families and examines: (1) people's awareness of stigma, and (2) their modes of adaptation to stigma. Results The participants all believed that they faced stigmatized treatment and were aware of the stigma associated with ID. They presented a range of views about self in relation to disability and stigma. These views included regarding themselves as part of a minority group who reject prejudice, and attempts to distance themselves from stigmatizing services and from other individuals with IDs. Conclusions The findings are discussed in relation to theories of self and the importance of considering psychosocial factors is stressed in clinical work with people who have IDs.

Autism and intellectual disability: a study of prevalence on a sample of the Italian population.

Abstract: Background In 1994, the American Association on Mental Retardation with the DSM-IV has come to a final definition of pervasive developmental disorders (PDD), in agreement with the ICD-10. Prevalence of PDD in the general population is 0.1–0.15% according to the DSM-IV. PDD are more frequent in people with severe intellectual disability (ID). There is a strict relationship between ID and autism: 40% of people with ID also present a PDD, on the other hand, nearly 70% of people with PDD also have ID. We believe that in Italy PDD are underestimated because there is no agreement about the classification system and diagnostic instruments. Method Our aim is to assess the prevalence of PDD in the Italian population with ID. The Scale of Pervasive Developmental Disorder in Mentally Retarded Persons (PDD-MRS) seems to be a very good instrument for classifying and diagnosing PDD. Results The application of the PDD-MRS and a clinical review of every individual case on a sample of 166 Italian people with ID raised the prevalence of PDD in this population from 7.8% to 39.2%. Conclusions The study confirms the relationship between ID and autism and suggests a new approach in the study of ID in order to elaborate a new integrated model for people with ID.

Cognitive abilities and genotype in a population-based sample of people with Prader-Willi syndrome.

Abstract: Background Prader–Willi syndrome (PWS) is characterized by extreme floppiness at birth, impaired sexual development, short stature, severe over-eating, characteristic physical features and learning disabilities (LD). Impaired social cognition, literal mindedness and cognitive inflexibility are also present. The syndrome has two main genetic subtypes that both result in the failure of expression of maternally imprinted genes on chromosome 15 at the locus q11-13. Methods Through multiple sources, we attempted to identify all people with PWS living in one health region in the UK. Additional people with PWS identified in other regions were also recruited to augment the study sample. A comparison group of people with LD as a result of aetiologies other than PWS was also identified. All people from these three groups, over age three, who gave their consent, were assessed using tests of ability and attainment. In addition, their main carers were interviewed using a semistructured interview. Blood samples for genetic diagnosis were obtained from all consenting participants. Findings The IQ distribution of the population sample was approximately normal with a mean IQ 40 points below that of the general population. There were systematic differences between the two main genetic subtypes. Those with disomies differed in cognitive profiles from both those with deletions and the comparison LD group (the latter two groups were very similar) in terms of better verbal abilities and impaired coding ability. Some people with PWS deletions had strong visuospatial skills. Interpretation We propose that the normal distribution of IQ, shifted downwards relative to that of the general population, is the result of a global effect on IQ of the PWS gene(s), and that the different cognitive profile seen in those with chromosome 15 maternal disomies is a specific effect of a gene, or genes, on chromosome 15 which is differentially either expressed or not expressed in those with disomies relative to those with deletions. One hypothesis is that these subtle cognitive differences are a manifestation of the genetic influences of gender-specific imprinted genes on cerebral lateralization. This requires further investigation.

People with Intellectual Disability and Their Health Problems: A Review of Comparative Studies.

Abstract: 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.

Mothers Expressed Emotion Towards Children With and Without Intellectual Disabilities.

Abstract: Objectives: To identify factors associated with maternal expressed emotion (EE) towards their child with intellectual disability (ID). Design and method: A total of 33 mothers who had a child with ID and at least one child without disabilities between the ages of 4 and 14 years participated in the study. Mothers completed self-assessment questionnaires which addressed their sense of parenting competence, beliefs about child-rearing practices, and their reports of behavioural and emotional problems of their child with ID. Telephone interviews were conducted to assess maternal EE towards the child with ID and towards a sibling using the Five Minute Speech Sample (FMSS; Magana et al. 1986), and also to assess the adaptive behaviour of the child with ID using the Vineland Adaptive Behaviour Scale (VABS; Sparrow et al. 1984). Results: Mothers with high EE towards their child with ID were more satisfied with their parenting ability, and their children had more behaviour problems. Analysis of differential maternal parenting, through comparisons of EE towards their two children, showed that mothers were more negative towards their child with ID for all domains of the FMSS except dissatisfaction. Conclusions: A small number of factors associated with maternal EE towards children with ID were identified. Differences in maternal EE towards their child with ID and their other child suggest that EE is child-driven rather than a general maternal characteristic. Implications of the data for future research are discussed.

General practitioners' educational needs in intellectual disability health.

Abstract: Background The community general practitioner (GP) has a central role in the provision of primary health care to people with intellectual disability (ID) as an indirect result of deinstitutionalization in Australia. This population, however, continues to experience poor health care compared to the general population. The current paper describes results from a questionnaire that aimed to identify the perceptions of practising GPs on the standards of health care for people with ID, the adequacy of prior training, and their interest in further education in relation to nine health care areas. Method A questionnaire was posted to a selective sample of 1272 practising GPs in Victoria selected from a database from the Centre for Developmental Disability Health Victoria and the Victorian Medical Directory of GPs registered with the Australian Medical Association. Data were available for 252 respondents with a response rate of 28.5%. Results The health areas in which many GPs reported to be inadequately trained were the same as those areas that were perceived as being of a poor standard. These areas were behavioural or psychiatric conditions, human relations and sexuality issues, complex medical problems, and preventative and primary health care. Ninety four per cent of respondents were interested in further education in at least one of the nine health care areas, with the most frequently nominated areas being behavioural or psychiatric conditions, syndrome-specific medical problems, human relations and sexuality issues and collaboration with government services. General practitioners did not nominate complex medical problems or preventative and primary health care for further education as frequently as they identified care in these areas to be substandard and their prior training inadequate. Conclusions The findings from the current research are discussed in relation to the implications for development of educational programmes based on learning needs identified by the GP. The most frequently nominated health care areas in all three questions were behavioural or psychiatric conditions and human relations and sexuality issues. Reasons for incongruence between the frequency of responses for complex medical problems and preventative and primary health care are explored.

Re-injecting spontaneity and balance in family life: parents' perspectives on recreation in families that include children with developmental disability.

Abstract: Grounded in the naturalistic paradigm, a mixed-method research design (survey questionnaire, n = 65; and interview, n = 16) was used to explore the nature and benefits of, and constraints to, family recreation in families that included children with developmental disability. Statistical analyses were conducted on the quantitative data, while key theme and constant comparative methods were used to analyse the qualitative data.

Burnout in direct care staff in intellectual disability services: a factor analytic study of the Maslach Burnout Inventory

Abstract: Background: There is gathering research interest in the well-being of staff working in services for people with intellectual disability (ID), including the assessment of burnout and its correlates. However, no previous studies have considered the applicability of the main three dimensions of burnout to staff in ID services. Methods: Data were analysed from two samples of staff (total n = 184) who participated in research studies that included completion of the Maslach Burnout Inventory (MBI). Results: Nineteen of the MBI items loaded clearly onto factors closely resembling the three original subscales: emotional exhaustion, depersonalization and personal accomplishment. Internal consistency for the three MBI subscales was fair to good (range 0.68–0.87). Conclusions: The original three MBI dimensions were found to be highly relevant to the present sample of staff. The analyses support the construct validity and reliability of the MBI for staff in ID services.

The modified CAMDEX informant interview is a valid and reliable tool for use in the diagnosis of dementia in adults with Down's syndrome.

Abstract: Background Dementia because of Alzheimer's disease (AD) commonly affects older adults with Down's syndrome (DS). Methods are needed, with established concurrent and predictive validity, to facilitate the diagnostic assessment of dementia, when it is complicated by pre-existing intellectual disabilities (ID). We report on the reliability and validity of a modified version of the Cambridge Examination for Mental Disorders of the Elderly (CAMDEX) informant interview, for use when assessing people with DS suspected as having dementia. Methods As part of a previous epidemiological study of older people with DS, the CAMDEX informant interview was used to determine the prevalence of dementia. The 74 people with DS included at that time (Time 1) had also completed the Cambridge Cognitive Examination (CAMCOG), the neuropsychological assessment from the CAMDEX schedule. Fifty-six were assessed again 6 years later (Time 2). Based on the CAMDEX informant interview, nine of the 74 at Time 1, and 11 of the 56 at Time 2, were found to meet clinical criteria for AD. Forty-one scored above floor on the CAMCOG at Time 1 and were included in the analysis of cognitive decline. Concurrent validity was established by comparing diagnosis at Time 2 with independent evidence of objective decline on cognitive tasks since Time 1. Predictive validity was established by examining how accurately diagnosis at Time 1 predicted both cognitive decline and future diagnosis. Inter-rater reliability was determined by comparing the level of agreement between two raters. Results CAMDEX-based diagnosis of AD was shown to be consistent with objectively observed cognitive decline (good concurrent validity) and to be a good predictor of future diagnosis. Although numbers are small, some support is also provided for the accuracy with which diagnosis predicts cognitive decline. Inter-rater reliability was good with Kappa > 0.8 for 91% of items and > 0.6 for all items. Conclusions The use of the modified CAMDEX informant interview enables the structured collection of diagnostic information, so that a valid and a reliable diagnosis of dementia can be made in those with pre-existing ID, using established diagnostic criteria.

Life events and psychiatric symptoms in adults with intellectual disabilities.

Abstract: Background Previous research has indicated that children and adults with intellectual disabilities (ID) may respond to traumatic and other life events in a similar way to the general population. However, few studies have charted the extent of exposure to recent life events in samples of adults with ID and the association of such exposure with general psychiatric problems. Methods Adults with ID (n = 1155) in community and residential services in a county district in North-east England were assessed using the Psychiatric Assessment for Adults with Developmental Disabilities Checklist (PAS-ADD Checklist), which includes a checklist of recent life events. Data were provided by informants who knew the index client well. Results Within the 12 months before data collection, the five most frequently experienced life events were: moving residence (15.5% of sample), serious illness of close relative or friend (9.0%), serious problem with close friend, neighbour or relative (8.8%), serious illness or injury to self (8.5%), and death of close family friend or other relative (8.3%). Overall, 46.3% had experienced one or more significant life events in the previous 12 months and 17.4% had experienced two or more. Logistic regression analysis revealed that the presence of one or more life events in the previous 12 months added significantly to the classification of psychiatric caseness predicted by demographic variables (age, sex, residence in community or hospital) on the PAS-ADD Affective Disorder scale. Overall, the odds ratio for affective disorder given exposure to one or more life events was 2.23 [95% confidence interval (CI) = 1.56, 3.18]. Conclusions Small, but potentially significant relationships were found between life events exposure and psychiatric problems in adults with ID. Further research is needed to explore the causal direction of this relationship and also to develop more sensitive measures of life events relevant to the situation of adults in residential and community service environments.

General psychiatric services for adults with intellectual disability and mental illness

Abstract: Background Adults with intellectual disability (ID) and mental illness may use general or specialist psychiatric services. This review aims to assess if there is evidence for a difference in outcome between them. Methods A literature review was conducted using a variety of electronic databases and hand-search strategies to identify all studies evaluating the outcome of people with ID and mental illness using general psychiatric services. Results There is no conclusive evidence to favour the use of general or specialist psychiatric services. People with ID stay less time on general psychiatric than specialist inpatient units. People with severe ID appear not to be well served in general services. Older studies of inpatient samples suggest a worse outcome for people with ID. Novel specialist services generally improve upon pre-existing general services. Assertive outreach in general services may preferentially benefit those with ID. Recent studies suggest similar lengths of stay in general psychiatric beds for people with and without ID. Conclusions Although 27 studies were located, only two were randomized controlled trials. The evidence is poor quality therefore further evaluation of services employing a variety of designs need to be employed to give more robust evidence as to which services are preferred.

Offenders with intellectual disability: a prospective comparative study

Abstract: Background Intellectually disabled offenders (IDO) are a poorly served and under-recognized group, who are likely to require long-term specialist treatments and interventions.Method This prospective study investigated the characteristics and factors that influence outcome in this group, with particular reference to therapeutic interventions. Sixty-one individuals were identified from contact with either (1) specialist health and social services for people with intellectual disability (ID) or (2) nonspecialist services in the criminal justice or (forensic) mental health/social service systems. The participants were assessed at baseline and after a mean of 10 months in order to compare recidivism rates and the impact of therapeutic interventions.Results The findings suggest that IDO start offending at an early age, that they frequently have a history of multiple offences, and that sex offending and arson are over-represented offence types. Those participants recruited from nonspecialist ID services had significantly higher IQs and were less likely to have had contact with community social and health support agencies. Despite the high rates of psychopathology, there was little evidence for efficacy of therapeutic interventions, which, where offered, appeared to be of a nonspecific nature. At second interview, approximately half of the sample had re-offended.

Behavioural and emotional disturbances in people with Prader–Willi Syndrome

Abstract: BACKGROUND: The study of the behaviour profile in subjects with Prader-Willi Syndrome (PWS). METHODS: A total of fifty-eight 3- to 29-year-old subjects with PWS were studied using a standardized parent report of behavioural and emotional disturbances. RESULTS: There was an increase of behavioural and emotional disturbances for the adolescent and young adult age range, whereas gender and intelligence were not significant. Increasing body mass index (BMI) was also associated with more behavioural and emotional disturbances. There was no significant relation between genetic status and behavioural abnormalities. CONCLUSIONS: This systematic study supports single case observations of a heightened psychiatric vulnerability of adolescent and young adult PWS subjects.

Psychiatric inpatient care for adults with intellectual disabilities: generic or specialist units?

Abstract: Background When adults with intellectual disabilities (ID) require a psychiatric admission, general adult mental health units are often used. Specialist units have emerged recently as a care option but there is only limited evidence of their effectiveness. Thus this study aims to describe and evaluate the effectiveness of a specialist inpatient unit and report on the utilization of generic and specialist inpatient services. Method All patients admitted to a specialist ID psychiatric unit were evaluated on admission and immediately after discharge on a number of outcome measures. In addition, they were compared with those admitted to general adult mental health units covering the same catchment area. Results Significant improvements were demonstrated within the specialist unit cohort on measures including psychopathology, global level of functioning, behavioural impairment and severity of mental illness. The specialist unit patients had a longer length of inpatient stay but were less likely to be discharged to out-of-area residential placement. Conclusions Specialist units are an effective care option for this group of people.

Screening for psychiatric symptoms: PAS-ADD Checklist norms for adults with intellectual disabilities

Abstract: Background The Psychiatric Assessment Schedule for Adults with Developmental Disabilities Checklist (PAS-ADD Checklist) is a screening instrument designed to help carers recognize likely mental health problems in people with intellectual disabilities (ID). To date there are no published PAS-ADD Checklist data on a large nonpsychiatric population of adults with ID, an important step towards developing norms for comparative purposes. Methods Informants who had known participants for a median 24 months completed the PAS-ADD Checklist on 1155 adults with ID living in community, residential care and hospital settings in a county district in the North-east of England. Results Normative data were obtained for the PAS-ADD Checklist for the study population with reference to gender, age, and type of residence. The overall prevalence of mental health problems was 20.1%, and the rates for affective/neurotic, organic and psychotic disorders were 14%, 3.9%, and 10.2%, respectively. Significant differences in the rates for particular disorders were found across gender, age and, residence type. Conclusions The rates of mental disorders found in the study population were consistent with previous studies of general populations of people with ID using over-inclusive screening instruments. The PAS-ADD Checklist appears to be an easy-to-use and sensitive tool for identifying mental health cases in ID populations, but further investigation is required concerning the specificity of the instrument.

Improving functional skills and physical fitness in children with Rett syndrome

Abstract: Background To investigate the feasibility of a physical exercise programme with treadmill for persons with Rett syndrome (RS) in order to promote fitness and health. Methods A daily training programme on a treadmill was designed for four females with RS over a period of 2 months with tests performed in three intervals, at time 1, 2 and 3, 2 months apart with intervention taking place between tests 2 and 3. Participants were four girls with RS aged 8.5–11 years (mean: 10 years) attending the educational facility Beit Issie Shapiro, Raanana, Israel, all with independent mobility and with typical characteristics of RS stage III. The training took place at the educational facility, on a 1400 model treadmill (Trimline, capable of very low speeds < 0.5 k/h), with very long side rails. Special low side rails were adapted to the treadmill in order to fit the height of the children and velcro straps were added to assist in safely placing the hands. Pulse was monitored constantly during exercise by an A3 polar pulse belt. Pulse measurements at rest during training were considered as evaluators of aerobic physical condition. Functional measurement was based on a scale specially established for the present study. The scale was a 31-item motor-functioning tool that measures the ability of participants to knee walk and knee stand, to get up to a standing position, duration of walking different paths, and to go up and down stairs and slopes. Results The study showed that physical fitness of the children at the end of the training programme had improved considerably (P < 0.05). Tests showed that general functional abilities had improved considerably (P < 0.0001). Although all items of the functional ability measure showed impressive positive change, some of the 31 items on it showed statistically significant improvement (knee walking, going up and down stairs and speed of walking for 25 m. Pearson correlation showed high linkage (r = −0.76) between functional improvement and change in physical fitness. Conclusions Physical fitness programme executed on a daily basis is capable of improving functional ability of children with RS. Nonprofessional personnel can execute such a programme under supervision of a qualified physical therapist.

Formal versus informal interventions for challenging behaviour in persons with intellectual disabilities.

Abstract: Background Although effective, humane treatments exist for persons with intellectual disabilities (ID) who have challenging behaviour, little research has examined the extent to which clients receive formal, documented vs. undocumented interventions. Methods Caregivers (of 625 persons with ID living in community and institutional residences in Ontario, Canada) were interviewed to examine the prevalence of different types of interventions. Results Overall, 55% of the 2506 different interventions (for 1464 target behaviours) were informal (i.e. lacking documented input from a professional, written intervention plans, and systematic evaluation). No significant differences emerged on formality of intervention across participant gender, age, level of ID, and type of residence. There were significantly more informal than formal behavioural interventions and counselling/psychotherapy, and no significant difference in the overall prevalence of formal and informal intrusive procedures. Behaviour control medications were paired more often with formal (67%) than informal interventions for dangerous behaviours. Formal interventions were associated with higher caregiver-reported estimates of behavioural improvement, higher inter-rater agreement on the descriptions of an individual client's target behaviours and interventions, and more caregiver training and supervision. Conclusions The low levels of intervention accountability, training and supervision may place many clients with challenging behaviour at increased risk for ineffective and unnecessary restrictive interventions, and physical abuse. The results of this survey stimulated the government to write province-wide standards (that have yet to be implemented).

Verbal short‐term memory in Down's syndrome: An articulatory loop deficit?

Abstract: Background Verbal short-term memory, as measured by digit or word span, is generally impaired in individuals with Down's syndrome (DS) compared to mental age-matched controls. Moving from the working memory model, the present authors investigated the hypothesis that impairment in some of the articulatory loop sub-components is at the base of the deficient maintenance and recall of phonological representations in individuals with DS. Methods Two experiments were carried out in a group of adolescents with DS and in typically developing children matched for mental age. In the first experiment, the authors explored the reliance of these subjects on the subvocal rehearsal mechanism during a word-span task and the effects produced by varying the frequency of occurrence of the words on the extension of the word span. In the second experiment, they investigated the functioning of the phonological store component of the articulatory loop in more detail. Results A reduced verbal span in DS was confirmed. Neither individuals with DS nor controls engaged in spontaneous subvocal rehearsal. Moreover, the data provide little support for defective functioning of the phonological store in DS. Conclusions No evidence was found suggesting that a dysfunction of the articulatory loop and lexical-semantic competence significantly contributed to verbal span reduction in subjects with DS. Alternative explanations of defective verbal short-term memory in DS, such as a central executive system impairment, must be considered.

The association between severity of intellectual disability and psychiatric symptomatology.

Abstract: Background Mental illness is more prevalent in people with intellectual disabilities (ID) than in the normal population. The association between mental illness and severity of ID is also of importance in the understanding and treatment of maladaptive and challenging behaviours. The aim of this study was to investigate the association between severity of ID and prevalence of mental illness. Methods Using The Mini PAS-ADD, an instrument designed to identify psychiatric symptoms in people with ID, informants were interviewed about the presence of symptoms in 96 participants with moderate, severe and profound ID, and asked about the use of psychotropic medication. Results Mental illness, particularly anxiety, depression and psychosis, was far more prevalent in participants with moderate ID than in people with severe and profound ID. The use of psychotropic medication was not significantly different between the groups. Conclusions The prevalence of psychiatric illness decreases with severity of ID. The usefulness of psychiatric illness models, in explaining maladaptive and challenging behaviours, also decreases with severity of ID. Drug treatment may become more complicated, and behavioural and environmental interventions may become relatively more important, as severity of ID increases.

The Resident Choice Scale: a measure to assess opportunities for self-determination in residential settings.

Abstract: Background A 26-item Resident Choice Scale was designed to assess service practices for promoting resident choice. Method The staff working with 560 UK/Irish adults with intellectual disability were interviewed. Specific examples of practices promoting resident choice were requested and independently rated by the interviewer. Results The interrater reliability of Resident Choice items was found to be acceptable (subsample n = 50). The psychometric properties of the Resident Choice Scale total score and scores on eight subscales were also acceptable. Consistently strong associations were found between greater resident choice and greater resident ability and, to a lesser extent, fewer resident challenging behaviours. Few associations were found between resident choice and autism or mental health problems. Even when controlling for resident ability and challenging behaviour, consistent associations were found between greater resident choice and the concurrent variables of greater community presence, fewer institutional practices, and greater user self-reported satisfaction (subsample n = 50). Conclusions Taken together, this pattern of results indicates that the Resident Choice Scale shows promise as a measure of the environmental opportunities available for adults with intellectual disability to exercise self-determination. Areas for future research testing the reliability and validity of the Resident Choice Scale are outlined.

Academic underachievement by people with Prader-Willi syndrome.

Abstract: Background Prader–Willi syndrome (PWS) is a genetically determined neurodevelopmental disorder that is associated with the under-expression of maternally imprinted genes at the 15q11–q13 chromosomal locus. In addition to a characteristic physical and behavioural phenotype, those with the syndrome have impaired social cognition, literal mindedness and inflexibility. The present authors investigated the relationship between the PWS cognitive and behavioural phenotype, educational experience, and levels of attainment in reading, writing and arithmetic. Methods All subjects from a population-based sample of people with PWS, augmented by those with PWS living in other regions together with a contrast group of people with learning disability (LD) of other aetiologies, are included in the present study. Those children over 3 years of age whose families consented or adults who themselves consented were assessed for ability and attainment (over 7 years of age), and information on functional ability was also obtained from an informant. Underachievement was defined as the difference between the score predicted from full-scale IQ and the actual achievement score. Results Commonly, levels of achievement were lower than would have been predicted on the basis of IQ among those in the groups with PWS and LD. In the group with PWS, underachievement across academic domains was positively correlated with the percentage of time in education in a special school and negatively correlated with Vineland Socialization domain standard score. There were no across-domain significant correlations in the group with LD. When using multiple regression analysis, the percentage of time in special school was the only predictor of underachievement and only in the group with PWS. However, some children with PWS in special schools did achieve as expected in at least one academic domain. Conclusions Children with PWS may be placed in special schools largely because of their behavioural problems or physical disabilities, or expectations based on their PWS status. Their intellectual abilities may well be masked by their immature social behaviour. The present authors propose that a failure to recognize and address the specific educational needs which follow from this combination of poor socialization skills and complex maladaptive behaviours, in the context of relatively mild LD, may explain their findings.

Prevention of unintentional injury to people with intellectual disability: a review of the evidence.

Abstract: Background: Recent research evidence shows that people with intellectual disability (ID) have double the unintentional injury risk of the general population and the risk is further increased in the presence of psychopathology and epilepsy. The pattern of injury and the circumstances surrounding an injury event in those with ID have some similarity with that of young children in the general population. Interventions to prevent injuries are an important health priority in this vulnerable population. This paper reviews evidence from injury prevention studies for people with ID and also considers the relevance of general population injury interventions for this population. Methods: Information regarding injury prevention in both ID and general populations was identified using online systems and consultation with research and public health organizations. Results: Few published studies were identified addressing the issue of injury prevention for those with ID. Possible injury prevention strategies appropriate for the major causes of injury in the ID population were identified from the general population literature. While many environmental injury prevention strategies for young children in the general population are applicable to the population with ID, some may require design modification to ensure effectiveness. Other promising approaches include improved information for parents/carers, primary care physician counselling, and home visits by well-informed and motivated professionals. There may be injury prevention benefit from improved management of psychopathology and epilepsy. Conclusions: The issue of injury prevention for those with ID has not been addressed to the extent that the magnitude of the problem requires. Injury prevention programmes trialling a variety of evidence-based approaches and strategies are needed to protect the quality of life for the ID population and their families.

Schizophrenia‐spectrum psychoses in people with and without intellectual disability

Abstract: Background Although there is an increased risk of schizophrenia-spectrum psychoses (SSP) in people with intellectual disability (ID), there is a paucity of research evidence into clinical presentation of the disorder in comparison with research into SSP in people without ID. Aims The aims of the study were to compare clinical, functional, and social factors in patients with mild ID (ICD-10: F70) and SSP (ICD-10: F20–9) attending a specialist mental health service for people with ID, with a control group of patients without ID but with SSP attending a generic adult mental health (GAMH) outpatient clinic. Method A total of 106 patients with SSP (53 with ID and 53 from GAMH) were assessed on psychopathological symptoms, functioning scales and quality of life. They were compared using chi-squared and regression analysis where appropriate. Results People with ID and SSP appear to be more debilitated by the co-occurring disorder than those with the same disorder but without ID. Increases in observable psychopathology and ‘negative’ schizophrenic symptoms, and decreased functional abilities were observed in the group with ID when compared to the GAMH group. The clinical implications of these findings are discussed.

Women with intellectual disability who have offended: characteristics and outcome

Abstract: BACKGROUND: There have been a few reports describing the characteristics and outcomes of male offenders with intellectual disability (ID). Therefore, while we are building up a reasonable picture of this client group, there are almost no reports of female offenders with ID. This paper is a preliminary attempt to present information on a small cohort of female offenders. METHODS: Characteristics of female offenders are presented including information on age, IQ, mental illness, referring agents, crimes committed, problems identified, sexual and physical abuse and outcome. Some comparisons are made with corresponding descriptions of male cohorts in Lindsay et al. (2004). RESULTS: The main result is that females constitute 9% of referrals to the service. Other notable results are that: at 61% sexual abuse in the cohort of female offenders is higher than in male cohorts but at 38.5% physical abuse is no higher than in appropriate comparison groups; as with mainstream female offenders identification of mental illness is high at 67%; and total re-offending over 5 years was 22% but, excluding prostitution, was only 16.5%. CONCLUSIONS: In some respects, this cohort of female offenders shows similar characteristics to their male counterparts. However, there are higher levels of mental illness, higher levels of sexual abuse and lower levels of re-offending. It is hypothesized that as females constitute such a low percentage of referrals, it suggests that women with ID do not show the same levels of sexually abusive behaviour or aggressive behaviour--the two most frequent reasons for male referral. Therefore, an intervening variable such as mental illness may indeed be a significant factor. Lower re-offending rates may indicate the success of interventions directed at psychological problems and mental illness. Language: en

Utilization of inpatient care and its determinants among persons with intellectual disabilities in day care centres in Taiwan.

Abstract: Background In Taiwan, current understanding is limited concerning the manner in which health services are utilized by persons with intellectual disabilities (ID). The objective of this study is to describe the patterns of inpatient care sought by persons with ID, and factors affecting inpatient care utilization. Method The primary method used in this study was a cross-sectional survey of 1390 persons with ID in day care centres. Data were obtained from responses to a questionnaire, copies of which were mailed to 30 day care centres catering for persons with ID. The questionnaire assessed demographic and health characteristics, disability status, and inpatient care utilization for the 12 months leading up to the survey. Multivariate logistic regression analysis identified factors independently associated with inpatient care. Results Findings indicated that the average age of the people with ID in the centres was 13.7 years. Fifty per cent of people were afflicted with multiple handicaps, with an average of 26 outpatient visits made per person during the 12 months, and 16% of persons having been hospitalized within the previous year. The average hospital stay was 6 days. Inpatient care was more likely to be used by those individuals with an ID who were younger, had multiple handicaps, required rehabilitation, and had other disabilities and existing illnesses. Conclusions The study concluded that the parameters describing age of persons with ID, as having an existing illness, and requiring rehabilitative care were statistically significant in the logistic regression model of the inpatient care.

Longitudinal prescribing patterns for psychoactive medications in community-based individuals with developmental disabilities: utilization of pharmacy records

Abstract: Background Little is known about longitudinal prescribing practices for psychoactive medications for individuals with intellectual disabilities and developmental disabilities (IDDD) who are living in community settings. Methods Computerized pharmacy records were accessed for 2344 community-based individuals with IDDD for whom a total of 3421 prescriptions were written during a 17-month period of study. Forty-two psychoactive medications were rank ordered in terms of prescription frequency. Results Fifty-two per cent (52%) of all prescriptions written during the study period were for psychoactive medications. Anticonvulsant, antipsychotic and antidepressant medications were the most commonly filled prescriptions among psychoactive medications. Sixty per cent (62%) of the study population was given prescriptions for more than one psychoactive medication and 36% received three or more psychoactive medications. During the study period there was a statistically significant increase in prescriptions filled for olanzapine, risperidone, valproic acid, and clonazepam whereas prescriptions filled for thioridazine, haloperidol, and benzotropine showed a significant decline (P < 0.05–0.001). Distribution of psychoactive drug class by age showed that the majority of prescriptions were filled for individuals between 20 and 50 years with the exception of prescriptions for psychostimulants which peaked for individuals prior to 20 years. Conclusions (1) Analysis of pharmacy billing records provides a method for assessing prescribing patterns of psychoactive medications in community-based individuals with IDDD. (2) Polypharmacy for psychoactive medications is prevalent in this setting. (3) The second-generation antipsychotic medications are prominently represented by an increasing number of filled prescriptions during the study period.

Relationship between theory of mind and language ability in children and adolescents with intellectual disability

Abstract: Background The present study was designed to evaluate the validity of the false belief task as a measure of theory of mind development in individuals with intellectual disability (ID). In most if it variants, the false belief task is linguistically demanding. This raises the possibility that the finding that individuals with ID do poorly on it might reflect language difficulties rather than theory of mind difficulties. Complicating matters further, however, is the fact that there are theoretical reasons to suppose that there might be a relationship between some dimensions of language ability and theory of mind development in individuals with ID (as well as in other populations). Method In the present study, children and adolescents with ID and typically developing (non-verbal) mental age matches completed a standard false belief task and several tasks designed to measure language ability. Results We reasoned that a pattern in which false belief performance was correlated with all measures of language ability would reflect an artefactual relationship, whereas a more highly circumscribed, theoretically sensible pattern of correlations that was similar across both groups would support the validity of the false belief task. Conclusions The results indicated that for individuals with ID who have limited narrative language skills, those limitations contribute substantially to their failure on the false belief task. For individuals with ID who have more highly developed narrative language skills (about 40% of the sample tested), however, the false belief task may provide a valid measure of their progress towards acquiring an adequate theory of mind. This latter conclusion was suggested by the fact screening out individuals who failed to meet linguistic and cognitive prerequisites for dealing with the performance demands of the false belief task yielded non-significant correlations between false belief performance and the language measures for both the group with ID and the typically developing comparison group.

Sex differences in performance over 7 years on the Wechsler Intelligence Scale for Children--Revised among adults with intellectual disability.

Abstract: Background The aim of this study was to explore changes related to sex differences on the Wechsler Intelligence Scale for Children – Revised (WISC-R) subtest performance over a 7-year interval in middle-aged adults with intellectual disability (ID). Cognitive sex differences have been extensively studied in the general population, but there are few reports concerning individuals with ID. Sex differences are of current relevance to actively debated issues such as cognitive changes during menopause and risk for Alzheimer's disease. Given that hormonal effects on cognition have been observed in the general population, particularly in areas such as visuospatial processing, and individuals with Down's syndrome (DS) have been reported to be hormonally and reproductively atypical, we analysed our data to allow for the possibility of an aetiology-specific profile of sex differences for these adults. Methods The WISC-R subtests were administered in a longitudinal study, as part of a more comprehensive test battery, at least twice within 7 years. Participants were 18 females with ID without DS [age at first test time (time 1): mean = 40.5; IQ: mean = 59.3], 10 males with ID without DS (age at time 1: mean = 42.4; IQ: mean = 59.4), 21 females with DS (age at time 1: mean = 37.9; IQ: mean = 51.6), and 21 males with DS (age at time 1: mean = 40.3; IQ: mean = 54.3). All participants were in the mild to moderate range of ID and were displaying no changes suggestive of early dementia. Results Females, regardless of aetiology of ID, exhibited a robust superiority on the coding subtest, which parallels the widely reported difference among adults in the general population. Additionally, there was a decline in overall performance during the 7-year study interval, particularly on the verbal subscale subtests, but there was no evidence of sex-differentiated decline. There were also marginal sex by aetiology interactions on the object assembly and block design subtests, suggesting that males with unspecified ID might perform better than their female peers, but among adults with DS, females might do better than males. Conclusions This study supports the presence of cognitive sex differences in the population with ID as indicated by female superiority on the WISC-R coding subtest. Extending this observation to adults with ID has implications for explanations of female advantage on this task, which now have to account for its presence among individuals with a broader range of intellectual capabilities, more atypical developmental histories and more varied genotypes than previously considered. Trends towards sex by aetiology interactions on the two visuoconstructive subtests, while marginal, were sufficient to warrant continued consideration of the idea of a distinct profile of sex differences for adults with DS and to justify looking at the effects of sex separately within different aetiologies of ID.

Vision in athletes with intellectual disabilities: the need for improved eyecare.

Abstract: Background Special Olympics provides sporting opportunities for people with intellectual disabilities (ID), and Lions Clubs International Opening Eyes GB offers vision screening for athletes at Special Olympics Games. Methods Opening Eyes GB screened the vision of 505 UK athletes at its inaugural event in 2001. The results were analysed and are presented here. Results Results showed that athletes do not differ from other people with ID in being at high risk of ocular and visual defects and many are not accessing eyecare. 15% reported never having an optometric eye examination, and yet 19% of these athletes had a significant refractive error, 32% had ocular anomalies and 6% were visually impaired. Overall, findings confirmed the high prevalence of refractive errors and strabismus amongst people with ID. 40% of athletes had ocular abnormalities, including 15.6% with blepharitis, a readily treatable condition that causes discomfort. 9% had lens opacities, of which half were probably impairing sight. An important finding was that many athletes have reduced vision and 14% could be classified as visually impaired (WHO definition) even when refractive errors were fully corrected. Conclusions Special Olympics athletes should be encouraged to have regular eye examinations (as indeed, should all people with ID), and educators, carers and coaches need appropriate information about the visual status of their charges.