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PubMed2005

Topiramate in long-term treatment of epilepsy in the intellectually disabled.

BACKGROUND: To study the effectiveness of topiramate (TPM) in refractory epilepsy in patients who have intellectual disability (ID). METHODS: A representative population sample of 57 patients with ID (age range 2-61, mean 32.8) was administered add-on TPM for drug-refractory epilepsy. RESULTS: Seizure freedom for at least for 6 months was attained by 10 (17%), and seizure reduction of > or = 50% by further 26 (46%). Less than 50% decrease in seizure frequency was found in 16 (29%). TPM was more efficacious in localisation-related than in generalised epilepsies (81% vs. 50%, P=0.019). An at least 50% decrease in seizure frequency was achieved by patients with temporal lobe epilepsy in 100%, continuous spike-waves during sleep syndrome in 75%, Lennox-Gastaut syndrome in 52%, and those with infantile spasms in 25% of cases. As great decrease in seizure frequency was found in most patients with cortical dysplasia (83%), acquired encephalopathy with mesial temporal sclerosis (MTS) (75%), and genetic disease associated with MTS (66%). Adverse effects occurred in 10% including two (3%) with seizure aggravation and three (5%) necessitating discontinuation. CONCLUSION: TPM is an effective antiepileptic drug which is of value in treating people with seizures that are resistant to other antiepileptic medication. As a broad-spectrum drug it may substitute for polypharmacy and, at the same time decrease adverse effects and costs of therapy.

Adult↗
PubMed2002

Behaviour/mental health problems in young adults with intellectual disability: the impact on families.

BACKGROUND: The present authors studied the impact of dual diagnosis [i.e. intellectual disability (ID) and mental disorder] in young adults on their mothers' perceived levels of stress and decisions about placement. METHODS: The mothers of 103 young adults with severe ID were interviewed using a 2-3-h in-depth protocol of measures designed to assess their child's adaptive functioning, maladaptive behaviour, mental health problems and negative impact on the family, as well as their own thoughts on out-of-home placement. The Scales of Independent Behavior--Revised Problem Behavior Scale assessed problem behaviours and the Reiss Screen assessed mental disorder. RESULTS: These measures were highly correlated (r = 0.64), but tapped some different domains of maladaptive behaviour and proved to be most predictive when employed together. Behaviour and/or mental health (B/MH) problems significantly predicted the mothers' perceived negative impact of the young adult on the family, even after controlling for other young adult characteristics. These problems also predicted the family's steps toward seeking out-of-home placement, as did better young adult health and the mother's higher educational attainment; stress did not predict additional variance in placement once these variables were accounted for. CONCLUSIONS: The discussion focuses on the implications for service provision to families of young adults with B/MH problems.

Activities of Daily Living↗
PubMed2004

People with intellectual disability and their health problems: a review of comparative studies.

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.

Activities of Daily Living↗
PubMed2003

Working with sex offenders with intellectual disability: evaluation of an introductory workshop for direct care staff.

BACKGROUND: Sexual aggression by men with intellectual disability (ID) is a serious problem requiring attention from the relevant agencies. Training for staff working with this problem is often not given sufficient attention and is rarely evaluated. In the present study, an introductory workshop for direct care staff that aimed to increase knowledge and improve attitudes towards work with this client group was evaluated. METHOD: Sixty-six staff working in inpatient and community settings completed a 2.5-day workshop. Before training began, the participants completed a survey questionnaire concerning their experiences of work with this client group. An assessment of their knowledge and attitudes was carried out prior to and at the end of training in order to evaluate any changes. The participants also rated the effectiveness of the workshop and their level of satisfaction with the training at the end of the workshop. RESULTS: The participants' knowledge and attitudes improved significantly following the workshop. Staff with greater experience over time and those who had worked with fewer sex offender clients responded to different aspects of the training. The participants' ratings indicated that they were highly satisfied with the training and found it to be effective. CONCLUSIONS: Brief workshop training is acceptable to and can be effective in improving the knowledge, attitudes and confidence of direct care staff working with sex offenders with ID. However, because the results are based on participant self-report, caution should be exercised concerning their external validity.

Attitude of Health Personnel↗
PubMed2006

Inattention, hyperactivity, and impulsivity in teenagers with intellectual disabilities, with and without autism.

OBJECTIVE: To explore inattentive, hyperactive, and impulsive behaviours in teenagers with intellectual disabilities (ID), with and without autism. METHOD: We identified teenagers with ID, with and without autism, in a single geographic area. Those with autism were matched for age, sex, and nonverbal IQ to those with ID only. We compared inattentive, hyperactive, and impulsive (IHI) behaviours in the 2 groups, along with adaptive functioning and medical circumstances. We further subdivided the autism group into those with IHI behaviours (autism IHI) and those without (autism non-IHI) and explored similarities and differences between autism subgroups. RESULTS: As a group, those with autism and ID had more IHI behaviours than those with ID alone. More in the autism group met criteria for attention-deficit hyperactivity disorder and hyperkinetic syndrome. Lifetime exposure to psychotropic medication was greater in the autism group, with stimulant and antipsychotic medications predominating. However, just under one-half of those in the autism group showed no IHI behaviours. Comparison of autism IHI and autism non-IHI groups showed that those with IHI behaviours were significantly more likely to have past (but not current) exposure to stimulant medication. CONCLUSIONS: One in 2 teenagers with ID and coexisting autism displayed clinically significant inattentive, hyperactive, and (or) impulsive behaviours, compared with 1 in 7 of those with ID alone. Most of the remaining teenagers with autism displayed no IHI behaviours. Our results support the need for further investigation into the prevalence and etiology of these IHI behaviours in individuals with autism.

Adolescent↗
PubMed2001

Audit and comprehensive health assessment programme in the primary healthcare of adults with intellectual disability: a pilot study.

International research has demonstrated significant shortcomings in the health of adults with intellectual disability (ID). Because general practitioners (GPs) are the main providers of primary healthcare for this population, strategies to improve general practice care are an important aspect of rectifying these shortcomings. The present pilot study aimed to determine the effect of various interventions on health maintenance activities and to assess their acceptability to GPs, with a view to informing larger scale studies. The GPs were recruited through an earlier questionnaire-based postal survey. The GPs identified all their adult patients with ID, then obtained consent for participation from three patients randomly selected by the investigators. The GPs completed two self-evaluation forms and case note audits 12 months apart, read a synopsis of the relevant literature provided by the researchers, and completed a comprehensive health assessment (CHA) of their three patients. Forty-five GPs agreed to participate in the CHA programme (CHAP), and 15 completed the project. Thirty-eight patients completed the project. The number of patient-GP dyads who completed the project was too small to demonstrate statistically significant changes in health issues over time. The GPs found that the synopsis of the literature was the best intervention for increasing knowledge and was also the most practical to use in general practice. The CHAP was the intervention that prompted the most action from the GP which would not have been undertaken otherwise. The CHAP appeared to provide a superior review process compared to the other interventions used in the present study. The numbers of health maintenance activities found to be overdue and the number of health issues detected as a result of the process were considerable. The CHAP served as a communication tool and an educative instrument, providing a basis for future studies and strategies to improve the general practice care of adults with ID.

Adult↗
PubMed2005

Effects of integrated or segregated sport participation on the physical self for adolescents with intellectual disabilities.

BACKGROUND: The purpose was to examine the effects of the type of athletic programme (integrated vs. segregated) on the athletic domain of perceived competence and on general self-worth. METHODS: Participants were 32 adolescent females with intellectual disabilities (ID), divided equally into four groups: (1) segregated swimming; (2) integrated swimming; (3) adapted physical activity; and (4) sedentary. The experimental treatment was 32 months long; for sport groups, this involved 2 h of training each week and 12 competitive meets. The Harter Self-Perception Profile for Children 11 times was administrated to determine changes in perceived physical competence and general self-worth. RESULTS: Results indicated (1) no change in perceived general self-worth for the four groups; (2) significantly lower perceived athletic competence only for the integrated swimming group, despite the increase in athletic performance. CONCLUSIONS: The integrated sport participation for adolescents with ID placed in segregated school is useful but needs to be well controlled by professional in physical education.

Adaptation, Psychological↗
PubMed2001

Abilities underlying decoding differences in children with intellectual disability.

Researchers in recent years have made much progress towards understanding why some children struggle to learn to read. However, little of this research has involved children with intellectual disability associated with an IQ < 70 (ID, also called mental retardation). In the present analysis, the authors examined cognitive similarities and differences between stronger and weaker decoders, all of whom have ID. The 65 children with ID in the present analysis were initially referred by their teachers for a study that involved training basic phonological reading skills. The present analysis compares 21 children who were excluded from the training study because their decoding skills were already too high with 44 children whose decoding skills were low enough for the training study. The groups were compared on general intelligence, language ability, phonemic awareness and phonological memory. Initial analyses showed that the stronger decoders were significantly better than weaker decoders in language ability, phonemic awareness and rehearsal in phonological memory, but not in intelligence. They were also significantly older than weaker decoders. When age was covaried out, the groups differed significantly only in rehearsal in phonological memory, although the difference for phonemic awareness was marginally significant when the poorest performers were excluded. When intelligence is substantially limited, the ability to rehearse or refresh phonological codes in working memory plays a major role in determining children's success in learning to read. This ability appears to be more important than intelligence, language ability and phonemic awareness. It is possible that the reason the phonemic awareness measure was not as good at distinguishing the groups as the phonological rehearsal measure was because the former did not involve assembling phonological output. It is suggested that it is the combination of poor phonological representation and poor phonological output assembly that makes decoding difficult for some children with ID.

Child↗
PubMed1996

Population prevalence of psychopathology in children and adolescents with intellectual disability: I. Rationale and methods.

Our knowledge of the epidemiology of psychopathology in children and adolescents with intellectual disability (ID) is hampered by a number of factors. These include the relative scarcity of studies of children rather than adults, the study of non-epidemiological samples such as those in institutions or those attending psychiatric clinics, a lack of standardized methods of assessment of psychopathology, studies with numbers too small to provide adequate confidence intervals around identified prevalence rates, insufficient detail concerning symptoms or syndromes as well as disorder, and a lack of consistent data concerning the effects of basic demographic variables such as age, sex and IQ. Despite these limitations, it is clear that psychopathology is several times more prevalent in children and adolescents with ID than in those without this disability. This paper reviews findings from previous studies and describes the methodology of a new study using the Developmental Behaviour Checklist.

Adolescent↗
PubMed2006

Mega numbers and lobbying for individuals with intellectual disabilities.

Lobbying is a competitive effort directed to reaching legislators who are attempting to balance the demands of individuals, organized groups, political parties and the complex economic realities of our times. Unfortunately, the use of all-inclusive "mega numbers" (whether it is the millions of individuals with intellectual disabilities or the billions of dollars for needed services) is difficult for any person to place in proper perspective. As a result, the millions of children and adults with intellectual/developmental disabilities become "just numbers" - not actual people. The need is to somehow personalize these numbers if we are to bring increased attention to these individuals with special needs. Census Bureau and private research foundation data are used to illustrate an approach to personalize the information for individual politicians.

Adolescent↗
PubMed2001

Dermatoglyphics and abnormal palmar flexion creases as markers of early prenatal stress in children with idiopathic intellectual disability.

A number of studies have shown the importance of dermatoglyphics as markers of prenatal disturbance in developmental disorders of unknown origin. Genetic and non-genetic factors are involved in the aetiology of intellectual disability (ID), although the cause remains unknown in up to 50% of cases. The aim of the present study was to analyse dermatoglyphic traits and abnormal palmar flexion creases as markers of environmental prenatal stress in children with idiopathic ID (IID) using a case-control study design. Three dermatoglyphic variables, which have been reported as altered in other congenital disorders, were considered were studied in a sample of 62 children with IID (IQ < 70) and 75 healthy controls (IQ > 70): (1) fingerprint patterns; (2) total a-b ridge count (TABRC); and (3) abnormal palmar flexion creases (APFCs). More arches, the simplest fingerprint pattern, and more radial loops, an unusual pattern, were found in IID cases in comparison to controls (chi23 = 9.26; P = 0.02), with especially marked differences in boys (chi23 = 6.5; P = 0.0008). A significant increase of APFCs was also found in the affected children (chi24 = 28.52; P < 0.00; odds ration = 3.86, 95% confidence interval = 1.77-8.47). For TABRC, the differences between IID cases and controls failed to reach the conventional level of significance. These findings suggest that environmental factors acting early in development, or mechanisms involving an interaction of genotype and environment could be involved in the aetiology of some cases of ID.

Adolescent↗
PubMed2004

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

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).

Adolescent↗
PubMed2005

[Tracheomalacia in patients with severe motor and intellectual disabilities].

A total of 18 patients with severe motor and intellectual disabilities are reported, including 17 identified as having tracheomalacia (TM) by bronchofiberscopy and 1 suspected case. The clinical backgrounds, bronchoscopic findings, managements and outcomes of these patients were studied. The ages ranged from 2 to 41 years old (mean : 22.8 years). Fourteen patients had cerebral palsy and 4 had other neuromuscular diseases. More than 80% of the patients had flattening of the thoracic cage, scoliosis, and recurrent respiratory infections. Bronchofiberoptic videoscopy revealed a mean 73.6% narrowing of the trachea, and 3 cases had 100% obstruction. The crescent type and a newly identified flat type of TM were observed, but there was no saber-sheath type. Attacks of cyanosis and transient or sudden respiratory difficulties were important symptoms for TM in 13 cases. TM may cause sudden death in these patients. Tracheostomy may be recommended for severe cases with TM. An adjustable tracheostomy tube improved the narrowing of the trachea significantly in 6 cases. Bronchofiberoptic videoscopy is nessesary for accurate evaluation of TM and an adjustable tracheostomy tube may be useful for selected patients.

Adolescent↗
PubMed2005

Enhancing primary health care services for adults with intellectual disabilities.

BACKGROUND: Primary health care teams have an important part to play in addressing the health inequalities and high levels of unmet health needs experienced by people with intellectual disabilities (ID). Practice nurses have an expanding role within primary health care teams. However, no previous studies have measured their attitudes, knowledge, training needs, and self-efficacy in their work with people with ID. METHODS: All practice nurses working in a defined area were identified. A purpose-designed questionnaire to measure nurse attitudes, knowledge, training needs and self-efficacy was developed and piloted. All practice nurses were then invited to participate. Data from completed questionnaires were entered onto PC and analysed. RESULTS: Of a total of 292 practice nurses 201 (69%) participated. Whilst 89% (n=179) of participants reported having infrequent contact, 25% (n=50) reported a growing workload with people with ID. Only 8% (n=16) had ever received any training in communicating with people with ID. A knowledge gap regarding the health needs of people with ID was identified. Eighty-six per cent reported having experienced specific difficulties during previous appointments, and only 23% thought they had sufficient case note information at appointments, but 68% did not modify the duration of their appointments with people with ID. Conversely, responses demonstrated that practice nurses have a high level of experience and qualification in general nursing, have positive attitudes to working with people with ID, and high self-efficacy scores were identified for work with people with ID. The practice nurses viewed ID to be a high priority area for future training. CONCLUSIONS: Primary health care teams have a key role in tackling the unmet health needs of people with ID. Whilst this project has identified factors that may impact on the accessibility of services, it has also identified practice nurses as having positive attitudes and high self-efficacy scores in their work with people with ID. This indicates that they should be targeted for specific training in this area, which may make an important contribution in enhancing future accessibility of primary health care services for people with ID.

Adult↗
PubMed2005

Careers of offenders with an intellectual disability: the probabilities of rearrest.

BACKGROUND This paper reports results from a total population of persons with intellectual disabilities (ID) in Western Australia arrested for the first time since 1 April 1984. It is part of a longitudinal study that 'tracked' offenders with ID through the criminal justice system over an 11-year period to compare their experiences at each stage of the justice process with a sample of the general offending population. The research draws on an analysis of the Western Australian Police Services Apprehension records and the Disability Services Commission database. METHOD The data collected provided the opportunity to calculate base rates of the probability of rearrest of offenders with ID in comparison to mainstream offenders. RESULTS The study found that people with ID had a significantly higher rate of rearrest than general population offenders and the study canvasses some possible reasons for this finding.

Adult↗
PubMed2004

Effectiveness of immediate verbal feedback on trainer behaviour during communication training with individuals with intellectual disability.

The effect of immediate verbal feedback on trainer behaviour during communication training sessions with individuals with intellectual disability (ID) was assessed. Trainers were six undergraduate university students majoring in psychology. The procedure consisted of interrupting the sequence of trials of training by the supervisor and then giving brief corrective feedback. Feedback was focused on the accuracy of the following procedural aspects: (1) entry behaviour; (2) prompt level and order of presenting response prompts; (3) use of reinforcement; (4) pace of presenting trials; and (5) if this occurred, handling trainee's disruptive behaviour during training. Data were collected in a nonconcurrent multiple baseline design. Results indicated a statistically significant increase of the percentage correct trainer behaviour as compared to the baseline phase. Maintenance of effect of feedback was recorded during post-training and follow-up.

Adult↗
PubMed2004

Mild intellectual disability in children in Lahore, Pakistan: aetiology and risk factors.

BACKGROUND: One of the main objectives of studying intellectual disability (ID) in children is to explore its causes. A specific aetiological diagnosis is important in determining the prognosis, nature and extent of services needed to support affected children. METHODS: Aetiology and risk factors in mild ID were studied in a cohort of longitudinally followed children (6-10 years of age, n = 40) in four population groups in and around Lahore, Pakistan. RESULTS: The overall prevalence of mild ID was 6.2%. In 22% of the cases the onset of mild ID was prenatal with small for gestational age and multifactorial inheritance as the main underlying factors. During the postnatal period (28% of the cases), social deprivation and malnutrition were the major causes of ID. In a substantial proportion of the cases (50%), the cause of ID could not be traced. CONCLUSION: The present study indicates a clear relationship of mild ID with prenatal and postnatal malnutrition and social deprivation. Two independent variables, maternal illiteracy and small head circumference at birth, showed a clear association with the development of mild mental disability among children in the study population.

Catchment Area, Health↗