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PubMed1998

The development of a self-report measure to assess the location and intensity of pain in people with intellectual disabilities.

The performance of a target group of 20 people with intellectual disability (ID) and a comparison group of 20 people who did not have ID was investigated on a series of tasks involving the judgement of the location of pain (on a bodymap) and the intensity of pain (on an analogue colour scale) in response to a series of photographs of simulated painful experiences. The results of the study indicated that: (1) there were no differences between the target and comparison groups in judging pain location for 93% of test items; (2) the performance of the target group in judging pain location was stable over time; (3) people with ID rated the pain images as more intense than the comparison group on all the 'mild' pain stimuli and 36% of the 'severe' pain stimuli; (4) the performance of the target group in judging pain intensity was logically consistent for 65% of comparisons (clear trends towards significance being apparent for a further 10% of items); (5) the performance of the target group in judging pain intensity was stable over time; and (6) the performance of the target group was unrelated to indicators of cognitive ability.

Adult↗
PubMed1997

Depression in adults with intellectual disability. Part 2: A pilot study.

OBJECTIVES: To identify adults with intellectual disability (ID) with a depressive disorder referred to a tertiary consultation clinic for psychiatric assessment; to investigate common presenting features of depression in adults with ID; to assess the utility of visual analogue scale (VAS) measures of emotion/behaviour, the CORE measure of psychomotor disturbance, and substitutive diagnostic criteria in the assessment of depressive disorders in this patient group. METHOD: Over a 6-month period 47 patients were seen for psychiatric evaluation. Patients in whom a diagnosis of depression was made were further assessed using: VAS measures of depression, irritability, verbal aggression, physical aggression, temper outbursts, regressed behaviour; CORE measure of psychomotor disturbance; and substitutive diagnostic criteria designed by the authors. RESULTS: Ten patients were found to have a depressive disorder. Substitutive criteria resulted in a greater rate of diagnosis than standard DSM-IV criteria. The VAS measure of irritability was highly scored for all 10 depressed patients. All 10 depressed patients were assigned to the melancholic subgroup according to CORE score. CONCLUSIONS: Standard assessment measures and diagnostic criteria may require modification to enhance their utility in this patient group. Melancholic features require further investigation.

Adult↗
PubMed2001

Visual impairment in adult people with intellectual disability: literature review.

The present paper reviews studies on the prevalence of visual impairment (VI) in adults with intellectual disability (ID). Every publication describes an alarming prevalence of blindness and VI. Cataract and keratoconus were common. Many cases of poor distance vision were treatable by ordinary spherical or astigmatic glasses, but few people had had such prescriptions. Elderly residents in community and institutional care often did not receive glasses for near vision. Professional assessments disclosed higher prevalences of VI than questionnaires mailed to the care personnel. The prevalence of VI increased dramatically with the severity of ID and with age. Regular professional assessment of eye disorders, visual acuity and refraction are warranted in residents in both hospital and community care.

Activities of Daily Living↗
PubMed2006

An exploration of substance misuse in people with intellectual disabilities.

BACKGROUND: Little is known about the characteristics of people with intellectual disabilities (IDs) who misuse substances and how such problems impinge upon their well-being. The aim of this paper is to describe how alcohol and drugs affect the health of people with IDs. METHODS: A questionnaire was forwarded to all the community ID teams and mainstream addiction teams across Northern Ireland: 67 substance users with IDs and substantial substance-related problems were identified. RESULTS: Alcohol was found to be the main substance to be misused, with one-fifth of the substance users also found to be using a combination of illicit drugs and/or prescribed medication. Nearly three-quarters of the sample were found to be hazardously using alcohol for more than 5 years. Being male and young, having a borderline/mild ID, living independently and having a mental health problem were found to be risk factors for developing a 'substance related problem'. Various problematic behaviours were identified, including aggression, erratic mood changes, sexual exploitation, difficulties in maintaining relationships and loss of daily routine. CONCLUSIONS: The findings of this study suggest that greater emphasis needs to be placed upon the early identification of this hidden population by primary and secondary healthcare personnel, and also ID personnel. Such early identification may also diminish the long-established patterns of use and associated related-behaviours that have been reported within this paper.

Adolescent↗
PubMed2004

Intravenous sedation for dental patients with intellectual disability.

BACKGROUND: The poor quality of oral health care for people with intellectual disability (ID) has been recognized, and the strong fears about dental treatment suggested as a major reason for disturbances of visits to dentists by such patients. Intravenous sedation is a useful method for relieving the anxiety and fear of such patients about dental treatment, and is frequently essential for ID patients undergoing dental treatment. However, decision regarding the dose of sedative required to be administered for an adequate level of sedation is difficult because the effect of sedation cannot be adequately assessed in patients with severe ID. As an appropriate sedative dose for dental patients with ID has not been fully established, we investigated sedative doses required and the effect of sedation in patients with ID, compared with other dental patients. METHODS: We reviewed the anaesthetic records of dental patients with ID (73 cases) and other dental patients (19 cases) aged between 20 and 29 years who had undergone intravenous sedation with midazolam and propofol in Okayama University Dental Hospital, from January 2000 to December 2000. Intravenous sedation was induced with a bolus intravenous administration of midazolam (2-3 mg) and maintained with a continuous infusion of propofol. The dose of propofol was titrated to achieve an adequate level of sedation: asleep but responding to painful stimulation. The efficacy of sedation, the required doses of propofol, and the wake-up times were investigated for all subjects. The efficacy of sedation was evaluated by judging whether the patient became cooperative and allowed the dental treatment to be carried out or not. The complications induced by intravenous sedation were also evaluated in each subject. Differences in variables between subjects with ID and other subjects were analysed using the Mann-Whitney U-test. RESULTS: Intravenous sedation was effective for dental treatment in all subjects with or without ID. The required dose of propofol in subjects with ID was 4.74 mg/kg/h (2.63-10.33 mg/kg/h), significantly higher than that required for other subjects (3.31, 1.72-4.80 mg/kg/h). Wake-up times of subjects with ID were similar to those of the other subjects. Severe complications were not seen during or after intravenous sedation. CONCLUSION: The results of this study show that intravenous sedation is a useful method for dental patients with ID as well as for other dental patients, but indicate that dental patients with ID need higher doses of sedative to obtain an adequate level of sedation.

Adult↗
PubMedDate not supplied

Integration of a psychiatric service in a long-term charitable facility for people with intellectual disabilities: a 5-year medication survey.

Since the implementation of a psychiatric service in a long-term facility for people with intellectual disability, the usage of psychotropic and anti-convulsant drugs has been surveyed over the 5-year period 1994-1999. At that time, although the overall prevalence rate of residents on medication was not declining significantly, a decrease in number, dosage and polypharmacy of those receiving neuroleptic drugs occurred than 1994. A reduction also resulted among the in-patients prescribed anxiolytic preparations, despite a relative increase in their mean daily intake. Anti-convulsant drugs climbed slightly during the same interval with a parallel increase in the mean daily dosage. A retrospective comparison of current findings to prevalence, dosage and type of psychoactive medications dispensed 10 years previously in 1989 revealed no trend towards drug rationalisation. Until interdisciplinary training programmes as well as effective community services combining disability and mental health needs are forthcoming, a therapeutic approach involving early psychiatric inputs may contribute to ensure a more rational prescribing practice for long-stay adults with intellectual disability who are referred for neuro-psychiatric consultation.

Adolescent↗
PubMed2006

The effectiveness of dementia care mapping in intellectual disability residential services: a follow-up study.

This article is presented as a follow-up to exploratory work published in this journal in 2001. It describes a study that aimed to assess the effectiveness of dementia care mapping in supporting practice improvement in intellectual disability residential services. An average of 9 hours of observational data was collected using dementia care mapping in relation to 14 adults with severe or profound intellectual disabilities. Sixteen interviews were also undertaken with staff over a 4 month period.The findings provided a detailed picture of the activities and interactions between the participants involved in the study and raised some issues about 'organizational culture' when developing person-centred approaches. They have helped strengthen the case that care mapping has the potential to be a useful addition to the existing repertoire of tools to support effective practice improvement and person-centred planning.

Activities of Daily Living↗
PubMedDate not supplied

Group interventions for anger in people with intellectual disabilities.

This paper describes an evaluation of a group intervention for reducing inappropriately expressed anger (as aggression) in people with intellectual disabilities. Group intervention was compared to a treatment as usual group consisting of people referred to the group but who had to wait to participate. The intervention used was based on the work of Novaco (1976; 1978) and Benson (1994). However, further modifications to the group that emphasized the contextual perspective of anger, such as the participants being accompanied by a support worker and more collaborative recording procedures, were devised. A reduction in expressed anger and measured levels of depression occurred after group treatment. Reductions in expressed anger were maintained at 6 and 12 months follow up. However, scores on the depression scale tended to increase on follow up. While caution must be expressed when considering these results, this type of intervention shows promise for reducing inappropriately expressed anger in people with intellectual disabilities Suggestions are made for future research and clinical practice.

Adult↗
PubMed2006

Working across boundaries: clinical outcomes for an integrated mental health service for people with intellectual disabilities.

BACKGROUND: The Mental Health Service for People with Learning Disabilities (MHSPLD) is a service development in keeping with UK government policy that promotes cross agency working and access to mainstream mental health services for people with intellectual disabilities. We aimed to show whether the service model brought about improvements in people's mental state and level of functioning. METHODS: Community and inpatient groups were compared across three time points using a range of clinical outcome measures that assessed psychiatric symptoms, risk, needs and level of functioning. RESULTS: Inpatients and community groups had similar mental health problems, but inpatients had higher unmet needs and lower functioning, and were at greater risk. There were significant improvements across the range of outcome measures in both groups. CONCLUSIONS: Working with mainstream mental health services and across health and social service boundaries delivers effective mental health care for people with intellectual disabilities.

Activities of Daily Living↗
PubMed2005

Assessment in intellectual disability.

PURPOSE OF REVIEW: This review examines an eclectic selection of publications from the past 12 months under the broad heading of 'assessment in intellectual disability'. Being unable to cover all possible publications the authors have concentrated on the assessment of pain (in those with severe intellectual disability), psychopathology, risk assessment and offending, autism, preference and choice, and dementia. RECENT FINDINGS: Research into assessment has generally taken the form of developing new instruments, or adapting existing ones, or comparing the performance of a range of scales in a certain area. Researchers are using increasingly sophisticated psychometric analyses and refining the nature and purpose of tools for a range of clinical purposes. SUMMARY: The result of recent effort in this area is better instruments, often developed by experienced researchers who have been working in their chosen area of speciality for some years. It has been a very worthwhile period of extension and consolidation.

Journal Article↗
PubMed2026

Identification of novel HUWE1 variants in Turner-type X-linked intellectual disability.

OBJECTIVE: To characterize the clinical phenotypes and identify the genetic etiology in four unrelated families affected by Turner-type X-linked intellectual disability (XLID). METHODS: Peripheral blood samples were collected from four probands and their parents. Genomic DNA was extracted, and a comprehensive genetic analysis was performed using trio-based Whole Exome Sequencing (WES) combined with low-pass Copy Number Variation sequencing (CNV-seq). Candidate variants were subsequently validated via Sanger sequencing. RESULTS: Genetic analysis identified distinct variants in the HUWE1 across the four families. Specifically, four distinct HUWE1 variants were identified across the families: a hemizygous c.10034 > T (p.Lys3345Met) in Family 1; a heterozygous c.9209G > A (p.Arg3070His) in Family 2; a heterozygous c.12688T > C (p.Phe4230Leu) in Family 3; and a hemizygous c.9070G > A (p.Ala3024Thr) in Family 4. In accordance with ACMG guidelines, the novel variants in Families 1, 3, and 4 were classified as "Likely Pathogenic" (PS2 + PM2_Supporting + PP2 + PP3). In contrast, the previously reported variant in Family 2 was categorized as "Pathogenic" based on the criteria PS2 + PM2_Supporting + PM5 + PP2 + PP3_Moderate. All probands were clinically diagnosed with Turner-type XLID. CONCLUSIONS: This study expands the pathogenic variant spectrum of HUWE1 and provides novel molecular evidence for the clinical diagnosis of Turner-type XLID. These findings are of significant value for genetic counseling, carrier screening, and prenatal diagnosis for the affected families.

Humans↗
PubMed2006

Risk factors for psychopathology in children with intellectual disability: a prospective longitudinal population-based study.

BACKGROUND: This study examined risk factors for the development of psychopathology in children with intellectual disability (ID) in the developmental, biological, family and social-ecological domains. METHODS: A population sample of 968 children, aged 6-18, enrolled in special schools in The Netherlands for educable and trainable ID were assessed at Time 1. A random 58% were re-contacted about 1 year later, resulting in a sample of 474 at Time 2. RESULTS: Psychopathology was highly consistent over 1 year. Risk factors jointly accounted for significant, but small, portions of the variance in development of psychopathology. Child physical symptoms, family dysfunction and previous parental mental health treatment reported at Time 1 were uniquely associated with new psychopathology at Time 2. CONCLUSIONS: Prevention and early intervention research to find ways to reduce the incidence of psychopathology, possibly targeting family functioning, appear important.

Adolescent↗
PubMedDate not supplied

Evaluation of an intervention system for parents of children with intellectual disability and challenging behaviour.

BACKGROUND: Signposts is a flexible intervention system for families of children who have intellectual disability and challenging behaviour. The Signposts materials include eight information booklets, a workbook and videotape for parents, and a series of instructional manuals for therapists. The system was designed so that it can be delivered in several different ways, i.e. group support, telephone support and self-directed modes. METHODS: The present study was an evaluation of these three modes of delivery and involved 115 families. RESULTS: Following the use of the Signposts materials in parent training programmes, the subjects reported that they were less stressed, felt more efficacious about managing their children's behaviour, were less hassled about meeting their own needs and that their children's behaviour had improved. Additionally, families generally reported high levels of satisfaction with the content and delivery of the materials. CONCLUSIONS: Finally, there were minimal differences among the three modes of delivery on the measures used, although families who used the self-directed mode were less likely to complete the materials. Implications of these results for service delivery are discussed.

Adult↗
PubMed2005

A randomized, double-blind, placebo-controlled trial of topiramate in adults with epilepsy and intellectual disability: impact on seizures, severity, and quality of life.

This randomized, double-blind, placebo-controlled UK trial evaluated the effect of topiramate as add-on therapy on seizure frequency, seizure severity, and quality of life in patients with epilepsy and intellectual disability. There were three phases: 4 weeks baseline, 18 weeks titration to 200-400 mg topiramate/day (adults) or 5-9 mg/kg/day (children), 12 weeks maintenance. Recruitment was low (88/120); analyses were underpowered. Seizure frequency varied enormously (median 17.7, maximum 1706.2). There was no significant difference in reduction in mean total seizure frequency or number of responders between the groups. Topiramate reduced seizure frequency by >30% from baseline (placebo 1%); post hoc analyses showed a trend toward significance (R ratio, P=0.052). There were no significant differences between the groups with respect to mean seizure severity or other outcome measures. Topiramate was generally well tolerated; body weight (P=0.015) and systolic blood pressure (P=0.043) were reduced. The study suggests that topiramate reduces seizure frequency in patients with epilepsy and intellectual disability without the added burden of behavior effects, and was potentially advantageous to physical well-being.

Adaptation, Psychological↗
PubMed2006

The general picture of supportive health environments for persons with intellectual disabilities among 121 disability welfare institutions in Taiwan.

BACKGROUND: Little information is available on the provision of supportive health environments for persons with intellectual disabilities (ID) in institutions. The aim of this study was to present an overview of supportive environments for health in institutions in Taiwan. METHODS: A cross-sectional survey was conducted to examine the perceptions of 121 Taiwanese Institutional Directors on their setting's implementation of supportive healthy physical, social, and economic environments. RESULTS: Analyses showed that first-aid kits (97.5%) and medicine cabinets (85.5%) were the most common health facilities in institutions. Seventy-three per cent of institutions had set up specific areas to be used for rehabilitation practice, while only 43.1% thought their rehabilitation equipment/devices adequate for their real needs. Eighty-eight per cent of institutions implemented health promotion plans for people with ID, while 76.6% had appropriated specific health promotion plans. Sixty-three institutions (52.1%) reported employment of skilled nurses to serve people with ID, and these institutions showed statistically significant differences in implementation of each health facility. CONCLUSIONS: The present paper is the first to analyze supportive environments for health in disability institutions in Taiwan. An important focus of future research will be the extension of the present findings to consider the appropriateness of each area of supportive environments for improving the quality of institutional care for people with ID.

Attitude of Health Personnel↗
PubMedDate not supplied

Importance and satisfaction of preventive health strategies in institutions for people with intellectual disabilities: a perspective of institutional directors.

AIM: To explore the perceptions of institutional directors on the preventive health strategies for people with intellectual disabilities in institutions. METHODS: A structured questionnaire was conducted by a cross-sectional postal survey in all registered institutions in Taiwan in 2002. A total of 157 questionnaires were mailed, of which 121 valid questionnaire were analyzed in this study. RESULTS: The respondents indicated important perception to the preventive health strategies across the 17 criteria, the mean score of importance in preventive health strategies was from 8.4 to 9.7 (score 1-10). But the analysis found that there were many gaps of 'importance' compared with 'satisfactory' to implementation of preventive health strategies, particularly in the issues of 'thyroid screening for intellectual disabilities (ID) with Down syndrome', 'prevention and treatment of osteoporosis', and 'diagnosis and treatment of mental disorders', these health issues need to be improved in institutions. The present study found that the size and ownership of institutions were not related to the perceptions of importance and satisfaction toward preventive health strategies. CONCLUSIONS: The institutions should explore the reasons of why the failure to carry through important health plans into practice to ensure quality of health services for people with ID who living in institutions.

Attitude to Health↗
PubMed1998

Role clarity, perception of the organization and burnout amongst support workers in residential homes for people with intellectual disability: a comparison between a National Health Service trust and a charitable company.

Changes in roles and responsibilities brought about by community care and the reorganization of the UK National Health Service (NHS) have resulted in higher levels of stress and insecurity amongst residential nursing staff working with people with intellectual disability. In the light of these organizational changes, questions have arisen about the relationship between role clarity, perception of the organization and occupational stress. A number of studies have investigated these issues amongst staff working with people with intellectual disability, although there have been few investigations in the UK. The present study examines the relationship between these variables in the context of the differences between the employees of an NHS trust and a charitable organization. The present study involved constructing a measure of role clarity and perception of the organization, and the use of the Maslach Burnout Inventory (MBI). The results indicated that most support workers regarded their role as being clear and their levels of burnout to be comparable with UK nursing norms. Charity staff were more likely to view their organization positively and rated their emotional exhaustion as significantly lower than NHS trust staff. A within-service comparison of homes revealed differences amongst NHS trust and charity homes on sub-scales of the MBI. The results are discussed in the context of previous research and changes in working practices in the field.

Attitude of Health Personnel↗