Overcoming the barriers experienced in conducting a medication trial in adults with aggressive challenging behaviour and intellectual disabilities.

BACKGROUND: Aggressive challenging behaviour in people with intellectual disability (ID) is frequently treated with antipsychotic drugs, despite a limited evidence base. METHOD: A multi-centre randomised controlled trial was undertaken to investigate the efficacy, adverse effects and costs of two commonly prescribed antipsychotic drugs (risperidone and haloperidol) and placebo. RESULTS: The trial faced significant problems in recruitment. The intent was to recruit 120 patients over 2 years in three centres and to use a validated aggression scale (Modified Overt Aggression Scale) score as the primary outcome. Despite doubling the period of recruitment, only 86 patients were ultimately recruited. CONCLUSIONS: Variation in beliefs over the efficacy of drug treatment, difficulties within multidisciplinary teams and perceived ethical concerns over medication trials in this population all contributed to poor recruitment. Where appropriate to the research question cluster randomised trials represent an ethically and logistically feasible alternative to individually randomised trials.

Knowledge and beliefs about epilepsy in mothers of children with epilepsy: a view from a developing country.

Twenty two mothers of children with epilepsy attending an EEG department were interviewed using a semi-structured interview schedule examining knowledge about epilepsy, attitudes towards their children and the pathways to treatment. The overwhelming impression is of a lack knowledge and uncertainty in the mothers about the condition. This is discussed in terms of effects on treatment and health educational programmes.

Coping with epilepsy in Zimbabwe and the Midwest, USA.

In this article, the experiences of persons with epilepsy were explored in terms of coping with providing a basis of discussion and training to support groups, particularly in Zimbabwe. Coping mechanisms lay stress upon the individual's control in mastering the disease. It was assumed that a systematic research effort of intra-cultural and cross-cultural sharing of experiences could enhance discussion and training in the support groups. Coping with epilepsy was explored with 37 adults (27 from Zimbabwe and 10 from the Midwest, USA) using open-ended questions in a written questionnaire. Questions aimed to elicit general feelings, experiences and strategies and skills in coping with epilepsy. The questionnaire covered such semantic domains as childhood, education, employment, friendships, relations within the family, and handling of seizures in public places. Coping mechanisms were categorized into two modes, one, adjustment to the disability (palliative), the other adjustment to the environment (problem-solving). In comparing the information between the two groups, some trends can be distinguished which need a larger scale validation. First, palliative skills during childhood in the Zimbabwean group is indicative for early development of personality characteristics and socialization as a result of the illness experiences. A great variety in palliative mechanisms in handling seizures indicates better familiarity with seizures in the Midwestern group. Similarities between the two groups are found in the friendship domain, where palliative coping skills seem to be of no importance, as well as in the domain of intimate relations, where a trend in adherence to medication is observed in both groups. Second, many problem-solving skills are developed in both groups but vary in context. In view of public education and training activities and the enhancement of problem-solving skills, the domain of education for the Zimbabwean group and the domains of friendship with the Midwestern group and the family perhaps deserve more attention. Third, coping skills in the Zimbabwean group tend to be related to the experience of 'being different', while in the Midwestern group 'not being able to doing things' is a major experience. Fourth, in linking coping mechanisms to the cultural environment, two major cultural influences in Zimbabwe stand out as being different from the Midwest, the first being the belief in external control and cause of mental and physical health, and the second, cultural conflict.

Long-term outcome from a medium secure service for people with intellectual disability.

BACKGROUND: The purpose of this paper is to describe long-term outcomes for patients discharged over a 12-year period from a medium secure service for people with intellectual disabilities (ID). METHODS: A cohort study using case-notes analysis and a structured interview of current key informants. RESULTS: Eleven per cent of the sample was reconvicted. Fifty-eight per cent of the sample showed offending-like behaviour that did not lead to police contact. Twenty-eight per cent of the sample was currently detained in hospital under the Mental Health Act. The presence of a personality disorder, a history of theft or burglary, and young age increased the risk of reconviction. Contact with the police was less likely in those with schizophrenia. Re-admission to hospital was associated with the presence of offending-like behaviours, rather than any specific diagnosis. CONCLUSION: In terms of reconviction, these results are good compared with those from general forensic services; however, behavioural problems continue for many years and are managed without recourse to the criminal justice system. There is a borderline group whose needs are poorly defined and serviced. Declaration of interests Horizon National Health Service Trust, the managing authority of the service, gave the grant for this study; the corresponding author was working in the service.

Randomized controlled trial of assertive community treatment in intellectual disability: the TACTILD study.

BACKGROUND: There has been a policy shift away from hospital to community in the services of all those with psychiatric disorders, including those with intellectual disability (ID), in the last 50 years. This has been accompanied recently by the growth of assertive outreach services, but these have not been evaluated in ID services. METHOD: In a randomized controlled trial we compared assertive outreach with 'standard' community care, using global assessment of function (GAF) as the primary outcome measure, and burden and quality of life as secondary measures. RESULTS: We recruited 30 patients, considerably less than expected; no significant differences were found between the primary and secondary outcomes in the two groups. The differences were so small that a Type II error was unlikely. CONCLUSIONS: Reasons for this lack of specific efficacy of the assertive approach are discussed and it is suggested that there is a blurring of the differences between standard and assertive approaches in practice.

Health screening for people with Down's syndrome.

All adults over the age of 18 years with Down's syndrome living in a borough of London, England, were identified through a case register. A questionnaire seeking information on health status and screening was sent to their carers. The reply rate was 70%. The attendance for general health care is reasonable, but there are some gaps in screening. The implications for primary health care and health promotion are discussed.

Rating management difficulty: a study into the prevalence and severity of difficult behaviour displayed by residents in a large residential hospital for the mentally handicapped.

This survey assessed the prevalence and severity of difficult behaviour displayed by residents in a residential hospital for the mentally handicapped as reported by the direct-care staff. Of the hospital residents, 30.2% were reported as having at least one problematic behaviour. The men were generally more difficult than the women and those on the disturbed wards more difficult than those on residential wards. Men and women exhibited the same types of behaviours in both disturbed and residential wards. However, withdrawn/uncooperative behaviour, stealing and inappropriate sexual behaviour were more prevalent on disturbed wards; withdrawn and inappropriate sexual behaviour being exhibited by more men than women on disturbed wards. The factors most likely associated with being on a disturbed ward were sex and age; young men presenting with most management difficulty. Approximately 12% of the hospital population were defined as presenting with a 'severe' management difficulty. Difficult behaviour is the main reason for admission to and remaining in hospital. The concept of management difficulty and the implications on service provision are discussed.

Difficulties in conducting a randomized controlled trial of health service interventions in intellectual disability: implications for evidence-based practice.

BACKGROUND: In an era of evidence-based medicine, practice is constantly monitored for quality in accordance with the needs of clinical governance (Oyebode et al. 1999). This is likely to lead to a dramatic change in the treatment of those with intellectual disability (ID), in which evidence for effective intervention is limited for much that happens in ordinary practice. As Fraser (2000, p. 10) has commented, the word that best explains "the transformation of learning disability practice in the past 30 years is 'enlightenment'." This is not enough to satisfy the demands of evidence, and Fraser exhorted us to embrace more research-based practice in a subject that has previously escaped randomized controlled trials (RCTs) of treatment because of ethical concerns over capacity and consent, which constitute a denial of opportunity which "is now at last regarded as disenfranchising". CONCLUSIONS: The present paper describes the difficulties encountered in setting up a RCT of a common intervention, i.e. assertive community treatment, and concludes that a fundamental change in attitudes to health service research in ID is needed if proper evaluation is to prosper.

Intensive case management for psychotic patients with borderline intelligence. UK 700 Group.

Patients with recurrent psychotic disorder and borderline learning disability who were randomly assigned intensive case management spent less than half the subsequent time in hospital than those who were assigned standard case management.

Prevalence and characteristics of patients with severe mental illness and borderline intellectual functioning. Report from the UK700 randomised controlled trial of case management.

BACKGROUND: Low cognitive ability and developmental delays have been implicated in the causation of mental illness. AIMS: To examine the prevalence, socio-demographic characteristics, psychopathology and social functioning profiles of people with low intelligence and recurrent psychotic illness. METHOD: A multi-centre randomised controlled trial of case management provided the opportunity to explore associations between mental illness and borderline intellectual functioning (assessed using the National Adult Reading test). RESULTS: Overall prevalence of borderline intelligence was 18%. Significant positive associations were shown with: being Black Caribbean; having a father who worked in a manual occupation; lower educational achievement; having had special education; longer course of illness. Those with borderline intelligence had greater disability and were more likely to suffer extrapyramidal side-effects and show evidence of negative symptoms. Educational achievement, history of special education and social class were the best socio-demographic predictors of intellectual level. CONCLUSIONS: Many patients who attend generic psychiatric services have considerable intellectual deficits. This may lead to difficulties in other domains of adaptive functioning, and merits further investigation as well as clinical vigilance.

Intellectual functioning and outcome of patients with severe psychotic illness randomised to intensive case management. Report from the UK700 trial.

BACKGROUND: Little research has been carried out on the benefits of intensive case management (ICM) for people with borderline IQ and severe mental illness. AIMS: To compare outcome and costs of care of patients with severe psychotic illness with borderline IQ to patients of normal IQ and to assess whether ICM is more beneficial for the former than for the latter. METHOD: The study utilises data from the UK700 multi-centre randomised controlled trial of case management. The main outcome measure was the number of days spent in hospital for psychiatric reasons. Secondary outcomes were costs of care and clinical outcome. RESULTS: ICM was significantly more beneficial for borderline-IQ patients than those of normal IQ in terms of reductions in days spent in hospital, hospital admissions, total costs and needs and increased satisfaction. CONCLUSIONS: ICM appears to be a cost-effective strategy for a subgroup of patients with severe psychosis with cognitive deficits.