Awareness of social care needs in people with epilepsy and intellectual disability.

BACKGROUND: Nearly a quarter of people with intellectual disability (ID) have epilepsy with large numbers experiencing drug-resistant epilepsy, and premature mortality. To mitigate epilepsy risks the environment and social care needs, particularly in professional care settings, need to be met. PURPOSE: To compare professional care groups as regards their subjective confidence and perceived responsibility when managing the need of people with ID and epilepsy. METHOD: A multi-agency expert panel developed a questionnaire with embedded case vignettes with quantitative and qualitative elements to understand training and confidence in the health and social determinants of people with ID and epilepsy. The cross-sectional survey was disseminated amongst health and social care professionals working with people with ID in the UK using an exponential non-discriminative snow-balling methodology. Group comparisons were undertaken using suitable statistical tests including Fisher's exact, Kruskal-Wallis, and Mann-Whitney. Bonferroni correction was applied to significant (p < 0.05) results. Content analysis was conducted and relevant categories and themes were identified. RESULTS: Social and health professionals (n = 54) rated their confidence to manage the needs of people with ID and epilepsy equally. Health professionals showed better awareness (p < 0.001) of the findings/recommendations of the latest evidence on premature deaths and identifying and managing epilepsy-related risks, including the relevance of nocturnal monitoring. The content analysis highlighted the need for clearer roles, improved care pathways, better epilepsy-specific knowledge, increased resources, and better multi-disciplinary work. CONCLUSIONS: A gap exists between health and social care professionals in awareness of epilepsy needs for people with ID, requiring essential training and national pathways.

Cognitive dysfunction and psychopathology: a cohort study of adults with intellectual developmental disorder.

BACKGROUND: Cognitive impairment of intellectual developmental disorders (IDD) is determined by several different combinations of specific cognitive alterations. People with IDD present a rate of mental health problems that is up to 4 times higher than that of the general population. Despite this, the relationship between specific cognitive dysfunctions and co-occurring mental disorders has not been adequately studied. The aim of the present paper is to investigate the association between specific cognitive dysfunctions and specific psychiatric symptoms and syndromes in people with IDD. METHODS: One hundred and twenty adults with mild to moderate IDD living in residential facilities underwent a clinical and instrumental assessment for specific cognitive and psychopathological features. RESULTS: Participants with IDD and ASD have significantly lower scores compared to those without respect to who has not the diagnosis on the Processing Speed Index (PSI) and Perceptual Reasoning Index (PRI) on the WAIS-IV and higher time scores on the TMT A. Moreover, there is a significant association between years of hospitalisation and TMT B and TMT B A time scores; the longer a participant with IDD was hospitalised, the worse their performance on the TMT. Although not statistically significant, many psychopathological clusters showed substantial cognitive profiles. CONCLUSIONS: Although further research is needed, neuropsychological and IQ tests scores seem to be differently associated to various psychopathological conditions co-occurring with IDD, and with ASD especially. Cognitive assessment seems to support diagnosis and treatment of psychopathological co-occurrences in persons with IDD, also in consideration of indirect implications including a better knowledge of the patient's characteristics beyond IQ deficit.

A pilot randomised controlled trial of befriending by volunteers in people with intellectual disability and depressive symptoms.

BACKGROUND: People with intellectual disability (ID) are more likely to experience chronic depression compared with the general population, which may be compounded by loneliness and lower levels of social support. Befriending aims to provide social support and promote engagement in community activities. No randomised controlled trials have examined whether befriending improves symptoms of depression and social outcomes in people with ID. The aim of this pilot trial was to assess the feasibility and acceptability of a future larger trial of one-to-one befriending by volunteers in people with ID and depressive symptoms. METHODS: Participants were adults with mild or moderate ID with a score of 5 or more on the Glasgow Depression Scale for People with Learning Disabilities (GDS-LD). They were randomised to the intervention arm (matched to a volunteer befriender for 6 months) or the control arm (usual care). Volunteers received training and supervision provided by two community befriending schemes. The main outcomes were feasibility of recruitment (minimum target n = 35), retention rate of participants, adherence (minimum 10 meetings), acceptability of the intervention, changes in depressive symptoms (assessed at baseline and 6 months) and feasibility of collecting data for a health economic analysis. RESULTS: Recruitment was challenging, and only 16 participants with ID and 10 volunteers were recruited. Six participants were matched with a volunteer and no participants dropped out (except for two volunteers). Four participants completed 10 meetings (mean 11.8). Befriending was thought to be acceptable, but modifications were suggested. An exploratory analysis suggested that GDS-LD score was lower in the intervention group compared with the control group after adjusting for baseline scores, but not significant (adjusted mean difference: -4.0; 95% confidence interval: -11.2 to 3.2). CONCLUSIONS: A large trial would not be feasible based on the recruitment strategies employed in this study. A further feasibility study addressing these challenges or the use of other study designs should be considered.

Resource use and cost of annual health checks in primary care for people with intellectual disabilities.

BACKGROUND: The annual health check (AHC) programme, as part of a Directed Enhanced Service, offers an incentive to general practitioners in England to conduct health checks for people with intellectual disabilities (IDs). The aim of this analysis was to estimate the impact on health care costs of AHCs in primary care to the National Health Service in England by comparing adults with ID who did or did not have AHCs using data obtained from The Health Improvement Network. METHODS: Two hundred eight records of people with ID from The Health Improvement Network database were analysed. Baseline health care resource use was captured at the time the first AHC was recorded (i.e. index date), or the earliest date after 1 April 2008 for those without an AHC. We examined the volume of resource use and associated costs that occurred at the time AHCs were performed, as well as before and after the index date. We then estimated the impact of AHCs on health care costs. RESULTS: The average cost of AHC was estimated at £142.57 (95%CI £135.41 to £149.74). Primary, community and secondary health care costs increased significantly after the index date in the no AHC group owing to higher increase in resource utilisation. Regression analysis showed that the expected health care cost for those who have an AHC is 56% higher than for those who did not have an AHC. Age and gender were also associated with increase in expected health care cost. CONCLUSION: The level of resource utilisation increased in both (AHC and no AHC) groups after the index date. Although the level of resource use before index date was lower in the no AHC group, it increased after the index date up to almost reaching the level of resource utilisation in the AHC group. Further research is needed to explore if the AHCs are effective in reducing health inequalities.

Borderline intellectual functioning and psychosis: Adult Psychiatric Morbidity Survey evidence.

Borderline intellectual functioning (BIF) is associated with several neuropsychological deficits. We used national data to establish the prevalence of psychosis and psychotic symptoms, and the role of potential mediators. The BIF group were more than twice as likely to have probable psychosis (adjusted odds ratio (OR)=2.3, 95% CI 1.4-4.0) and to report hallucinations (adjusted OR = 2.9, 95% CI 1.9-4.4) but not persecutory ideation. Salient mediators were depressive symptoms and the cumulative total of life events. Our findings suggest mechanisms other than drug use that are contributing to the strong relationship between BIF and severe mental illness and that may be amenable to treatment.

Subjective cognitive complaints across the adult life span: a 14-year analysis of trends and associations using the 1993, 2000 and 2007 English Psychiatric Morbidity Surveys.

BACKGROUND: Cognitive complaints are common in all age groups but most often researched in old age. We aimed to investigate prevalences and time trends over 14 years of subjective memory complaints (SMC) and subjective concentration complaints (SCC) in adults and investigate associations with mood disorders and cognitive function. METHOD: Data from three English national mental health surveys carried out in 1993, 2000 and 2007 were analysed. SMC and SCC were measured using the Clinical Interview Schedule-Revised and cognitive function using the modified Telephone Interview for Cognitive Status. RESULTS: Both SMC and SCC increased up to middle age and then declined, followed by a second rise in the very oldest age groups. Age-specific prevalence of both increased across survey years but relationships with mental health and cognitive outcomes were relatively stable. CONCLUSIONS: Cognitive complaints are most common in middle age and have become more prevalent over time.

Estimated verbal IQ and the odds of problem gambling: a population-based study.

BACKGROUND: The neurocognitive deficits and other correlates of problem gambling are also observable in individuals with lower cognitive abilities, suggesting that a low IQ may be a determinant of problem gambling. There has been very little research into this possibility. This study aimed to investigate the characteristics associated with problem gambling in a large population-based study in England, with a particular focus on IQ. METHOD: The Adult Psychiatric Morbidity Survey (APMS) 2007 comprised detailed interviews with 7403 individuals living in private households in England. Problem gambling was ascertained using a questionnaire based on DSM-IV criteria. Verbal IQ was estimated using the National Adult Reading Test (NART). Confounders included socio-economic and demographic factors, common mental disorders, impulsivity, smoking, and hazardous drug and alcohol use. RESULTS: More than two-thirds of the population reported engaging in some form of gambling in the previous year, but problem gambling was rare [prevalence 0.7%, 95% confidence interval (CI) 0.5-1.0]. The odds of problem gambling doubled with each standard deviation drop in estimated verbal IQ [adjusted odds ratio (OR) 2.1, 95% CI 1.3-3.4, p = 0.003], after adjusting for other characteristics associated with problem gambling including age, sex, socio-economic factors, drug and alcohol dependence, smoking, impulsivity and common mental disorders. There was no strong relationship observed between IQ and non-problem gambling. CONCLUSIONS: People with lower IQs may be at a higher risk of problem gambling. Further work is required to replicate and study the mechanisms behind these findings, and may aid the understanding of problem gambling and inform preventative measures and interventions.

The relationship between happiness and intelligent quotient: the contribution of socio-economic and clinical factors.

BACKGROUND: Happiness and higher intelligent quotient (IQ) are independently related to positive health outcomes. However, there are inconsistent reports about the relationship between IQ and happiness. The aim was to examine the association between IQ and happiness and whether it is mediated by social and clinical factors. Method The authors analysed data from the 2007 Adult Psychiatric Morbidity Survey in England. The participants were adults aged 16 years or over, living in private households in 2007. Data from 6870 participants were included in the study. Happiness was measured using a validated question on a three-point scale. Verbal IQ was estimated using the National Adult Reading Test and both categorical and continuous IQ was analysed. RESULTS: Happiness is significantly associated with IQ. Those in the lowest IQ range (70-99) reported the lowest levels of happiness compared with the highest IQ group (120-129). Mediation analysis using the continuous IQ variable found dependency in activities of daily living, income, health and neurotic symptoms were strong mediators of the relationship, as they reduced the association between happiness and IQ by 50%. CONCLUSIONS: Those with lower IQ are less happy than those with higher IQ. Interventions that target modifiable variables such as income (e.g. through enhancing education and employment opportunities) and neurotic symptoms (e.g. through better detection of mental health problems) may improve levels of happiness in the lower IQ groups.

Occupations, work characteristics and common mental disorder.

BACKGROUND: The present study aimed to assess the prevalence of common mental disorders (CMDs) by occupation in a representative sample of the English adult population. Another aim was to examine whether the increased risk of CMD in some occupations could be explained by adverse work characteristics. Method We derived a sample of 3425 working-age respondents from the Adult Psychiatric Morbidity Survey 2007. Occupations were classified by Standard Occupational Classification group, and CMD measured by the Revised Clinical Interview Schedule. Job characteristics were measured by questionnaire, and tested as explanatory factors in associations of occupation and CMD. RESULTS: After adjusting for age, gender, housing tenure and marital status, caring personal service occupations had the greatest risk of CMD compared with all occupations (odds ratio 1.73, 95% confidence interval 1.16-2.58). The prevalence of adverse psychosocial work characteristics did not follow the pattern of CMD by occupation. Work characteristics did not explain the increased risk of CMDs associated with working in personal service occupations. Contrary to our hypotheses, adding work characteristics individually to the association of occupation and CMD tended to increase rather than decrease the odds for CMD. CONCLUSIONS: As has been found by others, psychosocial work characteristics were associated with CMD. However, we found that in our English national dataset they could not explain the high rates of CMD in particular occupations. We suggest that selection into occupations may partly explain high CMD rates in certain occupations. Also, we did not measure emotional demands, and these may be important mediators of the relationship between occupation type and CMDs.

Brief report: impact of applied behaviour analysis (ABA) on carer burden and community participation in challenging behaviour: results from a randomised controlled trial.

BACKGROUND: Applied behaviour analysis (ABA) reduces challenging behaviour in people with intellectual disability. There is interest, however, in whether such interventions reduce carer burden and increase community participation in this group. METHODS: A 6-month randomised controlled trial was followed by a longer-term naturalistic follow-up of participants. We studied the impact of the challenging behaviour on the carers and on the daily activities of the participants measured by the Carer Uplift and Burden Scale and Guernsey Community Participation and Leisure Assessment respectively. RESULTS: Both community participation and carer burden improved at 6 and 24 months. Burden showed significant reduction in family carers compared with paid carers. There was no significant intervention effect on the variables under consideration. CONCLUSIONS: ABA appears to be no more effective than standard care in improving social outcomes in people with intellectual disabilities and challenging behaviour but this requires further examination in a larger trial.

Mental health needs in adolescents with intellectual disabilities: cross-sectional survey of a service sample.

BACKGROUND: Little research has been conducted on the mental health needs of adolescents with intellectual disability, despite the severity and rates of such needs being high throughout childhood and in adulthood. We have investigated the prevalence and predictors of mental health needs and service use in adolescents with intellectual disabilities. MATERIALS AND METHODS: Service-based sample (n = 75) in one catchment area. Individual assessments were carried out. The main outcome was the presence of mental health needs measured by the Developmental Behaviour Checklist. RESULTS: Prevalence of mental health needs increased from 51% as reported by parents to 67% as judged by clinical interviews. Caseness was associated with low adaptive functioning, diagnosis of autism and family history of mental illness. High scores on parent reports of participant mental ill-health showed negative correlations with adaptive functioning scores. Most individuals were in receipt of social and health care. Half of the participants had sought help for mental health needs. Almost half of those receiving medication were on psychiatric medication. CONCLUSIONS: Adolescents with intellectual disabilities may have considerable mental health problems which are functionally impairing yet frequently unidentified and hence untreated. Identification of those at risk and undertaking of a comprehensive needs assessment are essential to maximize potential and quality of life and to reduce further deficits and social exclusion.

Out-of-area provision for adults with intellectual disabilities and challenging behaviour in England: policy perspectives and clinical reality.

BACKGROUND: The use of out-of-area placements to meet the needs of individuals with intellectual disabilities and challenging behaviour has been increasing in the UK. Such placements claim a large proportion of service budget expenditure; therefore, it is important to consider whether they offer the best-quality care. This paper reports on current evidence relating to such placements and uses a scoping review across five London boroughs to illustrate key issues on provider characteristics and aspects of good practice. METHODS: We conducted a literature review to identify papers that describe out-of-area placements and carried out a postal survey of 54 service providers that delivered services to service users from five London boroughs. RESULTS: Individuals with intellectual disability and challenging behaviour are more likely to be placed out-of-area in services of variable quality and a minority may underperform. Our empirical data suggest that the private sector that is the main accommodation provider is most likely to underperform on meeting standards of care. CONCLUSION: Overall, the majority of out-of-area providers appear to supply a good standard of care but there are many factors that continue to hinder the local treatment of individuals who present with challenging behaviour. There is an imperative to identify poorly performing providers as well as exploring ways in which service users, out-of-area, can be supported effectively.

Epilepsy, anti-seizure medication, intellectual disability and challenging behaviour - Everyone's business, no one's priority.

PURPOSE: People with Intellectual Disability (ID) and epilepsy are more likely to experience psychiatric conditions, challenging behaviour (CB), treatment resistance and adverse effects of anti-seizure medications (ASM) than those without. This population receives care from various professionals, depending on local care pathways. This study evaluates the training status, confidence, reported assessment and management practices of different professional groups involved in caring for people with ID, epilepsy and CB. METHODS: A cross sectional survey using a questionnaire developed by expert consensus which measured self-reported training status, confidence, and approaches to assessment and management of CB in people with ID and epilepsy was distributed to practitioners involved in epilepsy and/or ID. RESULTS: Of the 83 respondents, the majority had either a psychiatry/ID (n = 39), or Neurology/epileptology background (n = 31). Psychiatry/ID and Neurology/epileptology had similar confidence in assessing CB in ID-epilepsy cases, but Psychiatry/ID exhibited higher self-rated confidence in the management of these cases. While assessing and managing CB, Psychiatry/ID appeared more likely to consider mental health aspects, while Neurology/epileptology typically focused on ASM. CONCLUSION: Psychiatry/ID and Neurology/epileptology professionals had varying training levels in epilepsy, ID and CB, had differing confidence levels in managing this patient population, and considered different factors when approaching assessment and management. As such, training opportunities in ID should be offered to neurology professionals, and vice versa. Based on the findings, a best practice checklist is presented, which aims to provide clinicians with a structured framework to consider causal explanations for CB in this population.

What to tell and how to tell: a qualitative study of information sharing in research for adults with intellectual disability.

OBJECTIVES: To explore opinions and attitudes regarding the current information-giving practices in research involving adults with intellectual disabilities. DESIGN: Qualitative focus group study with a purposive sample. SETTING: An intellectual disabilities service within the NHS PARTICIPANTS: A sample of 26 individuals including adults with mild intellectual disability, carers, clinicians, care managers and the charitable sector. RESULTS: Three main themes were identified: process, format, and content. There was agreement that there is a need for improvement in the process and quality of information giving. With regard to the content of information, there was little discrepancy between the study findings and existing guidance. CONCLUSIONS: Information should be presented in different formats and prepared with input from appropriate professions. Additionally the roles of peers, carers and other professionals in the process of information giving should be considered.

The role of behaviour problems in screening for mental ill-health in adults with intellectual disability

Depression and anxiety are common conditions in adults with intellectual disabilities (ID) and often coexist with behaviour problems. We examined whether behaviour problems can be used to screen for depression and anxiety in ID. Clinical prediction models (CPM) generated from independent databases supported the utility of the depression screen, especially in severe/profound ID. CPM did not support the utility of the anxiety screen at any ID level. Given the paucity of screening tools to improve ascertainment of mental ill-health in ID, the short depression screen would be clinically useful in identifying those who need to undergo a full diagnostic evaluation. (AU)

The effectiveness of person-centred planning for people with intellectual disabilities: A systematic review.

OBJECTIVES: To evaluate the effectiveness of Person-Centred Planning (PCP) on outcomes for individuals with intellectual disabilities (ID) across the age range. METHOD: The electronic databases PsycInfo, Embase, CINHAL, PubMed, Web of Science, Scopus and Medline were searched for studies evaluating the impact of PCP on people with ID, published between 1990 and 2014; these were supplemented by manual searches of reference lists. Studies were considered irrespective of methodology, sample size and publication source, if outcomes reflected the impact of PCP on individuals with ID. RESULTS: Seven quantitative, five qualitative and four mixed methods studies were included in the review. The overall quality of the evidence was low but suggestive that PCP may have a positive, yet moderate, impact on some outcomes for individuals with ID, particularly community-participation, participation in activities and daily choice-making. For other outcomes such as employment the findings were inconsistent. CONCLUSION: The evidence supporting the effectiveness of PCP is limited and does not demonstrate that PCP can achieve radical transformations in the lives of people with ID. Clearer descriptions of PCP and its components are needed. Small-scale successful demonstrations of effectiveness exist, but its clinical, cost-effectiveness and wider implementation must be investigated in large scale studies.

Behavioural and cognitive-behavioural interventions for outwardly-directed aggressive behaviour in people with learning disabilities.

BACKGROUND: Outwardly directed aggressive behaviour is a significant part of problem behaviours presented by people with learning disabilities. Prevalence rates between 3.3% to 36% have been reported in the literature. Such behaviours run a long term course and are a major cause of social exclusion OBJECTIVES: To determine the efficacy of behavioural and cognitive behavioural interventions for outwardly-directed aggressive behaviour for people with learning disabilities. SEARCH STRATEGY: The Cochrane Library (CENTRAL), MEDLINE, EMBASE, CINAHL, ERIC and PsycINFO were searched using a strategy combining (Learning or synonyms) and (Disabilities or synonyms) and (Behaviour or synonyms) and (treatment or synonyms) to late 2002. Where appropriate, research filters were used. SELECTION CRITERIA: Studies were selected if more than 4 participants, children or adults, were allocated by random or quasi-random methods to either intervention or standard treatment/wait list. DATA COLLECTION AND ANALYSIS: References identified by electronic searches, examinations of bibliography and personal contacts were screened against inclusion criteria by two independent reviewers. MAIN RESULTS: Three studies based on adult populations with learning disabilities were deemed to be suitable for inclusion but data were only available in a form suitable for meta-analysis in two studies. Direct interventions based on cognitive-behavioural methods (modified relaxation, assertiveness training with problem solving, and anger management) appear to have some impact on reduction of aggressive behaviour at the end of treatment but not at follow up (up to six months) as rated by individuals and their carers. REVIEWERS' CONCLUSIONS: The existing evidence on the efficacy of cognitive behavioural and behavioural interventions on outwards directed aggression in children and adults with ID is scant. There is a paucity of methodologically sound clinical trials. Given the impact of such behaviours on the affected individual, his or her carers and on service providers, effective interventions are essential. It is also important to investigate cost efficacy of treatment models against existing treatments. We recommend that randomised controlled trials of sufficient power are carried out using primary outcomes of reduction in outward directed aggression, improvement in quality of life and cost efficacy as measured by standardised scales.

Clinical examples of cross-cultural work in a community learning disability service.

The debate on the correct application of the terms race and ethnicity continues while community care takes place in a multicultural society. The impact of mental illness and mental handicap (currently referred to as learning disability) on different ethnic groups partly depends on societal influences which also determine the policy for service organisation. As the treatment and support of the mentally handicapped has moved away from the custodial care of yesteryear, professionals must ensure that their practice is sensitive to the religion, ethnicity and languages of the communities they serve. This paper describes examples of psychiatric clinical practice with two families of Greek and Kuwaiti background, in the setting of a community learning disability team.

The development of manualised cognitive behaviour treatment for adults with mild intellectual disability and common mental disorders.

People with intellectual disability are at a greater risk of developing common mental disorders. In the United Kingdom, the National Institute for Health and Clinical Excellence guidelines recommend cognitive behavioural therapy (CBT) as the treatment of choice for such problems. Even though there is growing evidence that people with mild intellectual disability can benefit from CBT, there are no manuals to assist in the delivery of the treatment. Previously published material from journals and books describing both CBT in people with intellectual disability and the general population was reviewed to create the first draft. Further consultations with professionals and service users with intellectual disability on the content, accessibility and language that was used in the manual were carried out. Specific materials were developed for use in the therapy sessions and for homework. The manual, written for trained therapists, provides generic information about communication and thinking styles in people with mild intellectual disability and describes in detail how to conduct each session. It contains also contains the materials and a leaflet to help carers support the treatment. Manualised treatments are helpful in maintaining a consistent approach to treatment and may be more beneficial for hard to reach population groups.