Craig A. Melville

People with intellectual disabilities

Their health needs differ and need to be recognised and met People with intellectual disabilities comprise about 2% of the UK population. Demographics are, however, changing and the population of people with intellectual disabilities increased by 53% over the 35 year period 1960-95, which equals 1.2% per year.1 A further 11% increase is projected for the 10 year period 1998-2008. These changes are the result of improved socioeconomic conditions, intensive neonatal care, and increasing survival. The health needs of people with intellectual disabilities have an impact on primary healthcare services and all secondary healthcare specialties. People with intellectual disabilities experience health inequalities compared with the general population. Although their life expectancy is increasing, it remains much lower than for the rest of the population.2–5 The standardised mortality ratio has been found to be 8.4 for people with severe intellectual disabilities in United States and 4.9 for people with intellectual disabilities of all levels in Australia.4 5 Additionally, people with intellectual disabilities have higher levels of health …

The prevalence and determinants of obesity in adults with intellectual disabilities.

People with intellectual disabilities experience significant health inequalities compared with the general population, including a shorter life expectancy and high levels of unmet health needs. Another accepted measure of health inequalities, the prevalence of obesity, has been shown to be higher in adults with intellectual disabilities than in the general population. While the factors contributing to the increased prevalence among adults with intellectual disabilities are not well understood, the high rates of obesity among younger adults highlight the need for further research involving children and adolescents with intellectual disabilities. To take forward the priorities for research and the development of effective, accessible services, there is a need for collaboration between professionals working in the fields of intellectual disabilities and obesity.

A review of weight loss interventions for adults with intellectual disabilities

Obesity is more prevalent in adults with intellectual disabilities than in the general population, and has been shown to contribute to their reduced life expectancy, and increased health needs. Relatively few studies have examined the effectiveness of weight loss interventions for adults with intellectual disabilities. However, there is evidence to support interventions that take account of the context of the lives of adults with intellectual disabilities, including carer involvement in interventions. To reduce the health inequalities experienced by adults with intellectual disabilities, there is a clear need to develop accessible, evidence‐based clinical weight management services.

The prevalence and incidence of mental ill-health in adults with autism and intellectual disabilities

The prevalence, and incidence, of mental ill-health in adults with intellectual disabilities and autism were compared with the whole population with intellectual disabilities, and with controls, matched individually for age, gender, ability-level, and Down syndrome. Although the adults with autism had a higher point prevalence of problem behaviours compared with the whole adult population with intellectual disabilities, compared with individually matched controls there was no difference in prevalence, or incidence of either problem behaviours or other mental ill-health. Adults with autism who had problem behaviours were less likely to recover over a two-year period than were their matched controls. Apparent differences in rates of mental ill-health are accounted for by factors other than autism, including Down syndrome and ability level.

Cost Estimation of a Health-Check Intervention for Adults with Intellectual Disabilities in the UK.

BACKGROUND High rates of health needs among adults with intellectual disabilities flag the need for information about the economic consequences of strategies to identify and address unmet needs. Health-check interventions are one such strategy, and have been demonstrated to effect health gains over the following 12-month period. However, little is known about their effects on service use and costs, and hence how affordable such interventions are. METHODS We examined service use patterns and costs over a 12-month period for 50 adult participants with intellectual disabilities who received a health-check intervention and 50 individually matched control participants who received standard care only. RESULTS The health-check intervention was cheap, and it did not have associated higher costs in terms of service usage. Indeed, mean cost of care for the adults who received standard care only was greater than for the adults who received the health-check intervention. The higher costs were due to differences in unpaid carer support costs. CONCLUSION This is the first study to report the associated service use, and costs of a health-check intervention to improve the health of adults with intellectual disabilities and reduce health inequalities. Results suggest this intervention is cheap and affordable compared with standard care, supporting clinical outcome evidence for its introduction into health care policy and implementation. However, further research is needed to confirm this finding with a larger sample.

Practice nurse health checks for adults with intellectual disabilities: a cluster-design, randomised controlled trial

BACKGROUND Adults with intellectual disabilities have substantial health inequalities and poor access to health care. We assessed whether practice nurse-delivered health checks could improve the health of adults with intellectual disabilities compared with standard care. METHODS In this cluster-design, single-blind, randomised controlled trial, we included general practices in Scotland, UK. From June to December, 2011, we randomly assigned (1:1) these general practices to either health checks plus standard care (health-checks group), or standard care only (control group), and we recruited the patients from these practices. Randomisation was done with stratification by number of GPs per practice and number of registered patients with intellectual disabilities (<20 or ≥20). Two research assistants were masked to allocation, and undertook the review of 9 month medical records and interviews. Participants and carers were not masked. The intervention was one health check designed especially for people with intellectual disabilities delivered by a practice nurse. The objective was improvement in health and health care 9 months after randomisation, and the primary outcome was the incidence of newly detected health needs being met by this timepoint. Whether needs were met was established by the investigators being masked to group allocation. The analysis was by intention to treat. This trial is registered with Current Controlled Trials, number ISRCTN43324841. FINDINGS Between June 26 and Dec 20, 2011, we recruited 38 practices. 85 participants (from 16 practices) were randomly assigned to intervention and 67 (from 17 practices) to standard care; five of the identified practices did not supply any participants. 83 intervention and 66 standard care participants completed the trial. More newly detected health needs were met in the intervention group than in the control standard care group (median 1 [range 0-8], 76·4% met [SD 36·5] vs 2 [0-11], 72·6% met [35·4]; odds ratio [OR] 1·73 [95% CI 0·93-3·22], p=0·085), although this difference was not significant. Significantly more health monitoring needs were met in the intervention group than standard care (median 2 [0-20], 69·9% [SD 34·2] vs 2 [0-22], 56·8% [29·4], OR 2·38 [95% CI 1·31-4·32, p=0·0053]). The probability that health checks are cost effective was between 0·6 and 0·8, irrespective of the cost-effectiveness threshold level. Costs per patient were -£71·48 for health checks and -£20·56 for standard care. The difference (-£50·92) was not significant [95% CI -434 to 362]. No adverse events were attributable to the intervention. INTERPRETATION Health checks given by practice nurses to adults with intellectual disabilities produced health-care improvements that were more conducive to longer-term health than standard care given to this population. The intervention dominated standard care, being both cheaper and more effective. Health-check programmes might therefore be indicated for adults with intellectual disabilities. FUNDING Scottish Government Change Fund, NHS Greater Glasgow and Clyde Research and Development.

A cohort study of the prevalence of sleep problems in adults with intellectual disabilities

Previous studies of the prevalence of sleep problems in adults with intellectual disabilities (ID) are affected by small, potentially biased samples and other limitations. This study aims to determine the prevalence and associations of sleep problems in the adult population with ID. The 4‐week period prevalence of sleep problems was determined in a cross‐sectional study of all adults with ID in a defined geographical area. Sleep problems were identified using the Psychiatric Assessment Scale for Adults with Developmental Disabilities (PAS‐ADD) checklist and categorized as initial insomnia, early morning wakening and broken sleep. A fourth, composite, variable of significant sleep problem was also derived. Of the 1023 adults with ID who participated, 9.2% had experienced a significant sleep problem, during the 1‐month period. Individuals with a significant sleep problem are more likely to have mental ill‐health [odds ratio (OR) = 5.53, 95% confidence interval (CI) 3.52–8.69], problem behaviours (OR = 2.06, 95% CI: 1.25–3.41) and respiratory disease (OR = 2.03, 95% CI: 1.27–3.26). There is a positive association between visual impairment and initial insomnia (OR = 1.91, 95% CI: 1.21–3.04). Although a diagnosis of epilepsy is not associated with sleep problems, the finding that individuals taking antiepileptic medication are more likely to experience broken sleep (OR = 1.73, 95% CI: 1.13–2.66) suggests that medication side effects may impact on sleep of individuals with ID. The results suggest that there is a need to further examine the relationship between sleep problems and co‐morbid health problems, which would inform the development of interventions, and trials of their efficacy.

Neighbourhood Deprivation, Health Inequalities and Service Access by Adults with Intellectual Disabilities: A Cross-Sectional Study.

BACKGROUND Adults with intellectual disabilities (IDs) experience health inequalities and are more likely to live in deprived areas. The aim of this study was to determine whether the extent of deprivation of the area a person lives in affects their access to services, hence contributing to health inequalities. METHOD A cross-sectional study design was used. Interviews were conducted with all adults with IDs within a defined location (n = 1023), and their medical records were reviewed. The extent of area deprivation was defined by postcode, using Carstairs scores. RESULTS Area deprivation did not influence access to social supports, daytime primary health-care services or hospital admissions, but people in more deprived areas made less use of secondary outpatient health care [first contacts (P = 0.0007); follow-ups (P = 0.0002)], and more use of accident and emergency care (P = 0.02). Women in more deprived areas were more likely to have had a cervical smear; there was little association with other health promotion uptake. Area deprivation was not associated with access to paid employment, daytime occupation, nor respite care. These results were essentially unchanged after adjusting for type of accommodation and level of ability. CONCLUSIONS Deprivation may not contribute to health inequality in the population with IDs in the same way as in the general population. Focusing health promotion initiatives within areas of greatest deprivation would be predicted to introduce a further access inequality.

Accelerometer use during field-based physical activity research in children and adolescents with intellectual disabilities: A systematic review

Many methodological questions and issues surround the use of accelerometers as a measure of physical activity during field-based research. To ensure overall research quality and the accuracy of results, methodological decisions should be based on study research questions. This paper aims to systematically review accelerometer use during field-based research in children and adolescents with intellectual disabilities. Medline, Embase, Cochrane Library, Web of Knowledge, PsycINFO, PubMed, and a thesis database (up to May 2013) were searched to identify relevant articles. Articles which used accelerometry-based monitors, quantified activity levels, and included ambulatory children and adolescents (≤ 18 years) with intellectual disabilities were included. Based on best practice guidelines, a form was developed to extract data based on 17 research components of accelerometer use. The search identified 429 articles. Ten full-text articles met the criteria and were included in the review. Many shortcomings in accelerometer use were identified, with the percentage of review criteria met ranging from 12% to 47%. Various methods of accelerometer use were reported, with most use decisions not based on population-specific research. However, a lack of measurement research, e.g., calibration/validation, for children and adolescents with intellectual disabilities is limiting the ability of field-based researchers to make to the most appropriate accelerometer use decisions. The methods of accelerometer use employed can have significant effects on the quality and validity of results produced, which researchers should be more aware of. To allow informed use decisions, there should be a greater focus on measurement research related to children and adolescents with intellectual disabilities.

Clinical guidelines contribute to the health inequities experienced by individuals with intellectual disabilities

BackgroundClinical practice guidelines are developed to improve the quality of healthcare. However, clinical guidelines may contribute to health inequities experienced by disadvantaged groups. This study uses an equity lens developed by the International Clinical Epidemiology Network (INCLEN) to examine how well clinical guidelines address inequities experienced by individuals with intellectual disabilities.MethodsNine health problems relevant to the health inequities experienced by persons with intellectual disabilities were selected. Clinical guidelines on these disorders were identified from across the world. The INCLEN equity lens was used as the basis for a purpose-designed, semistructured data collection tool. Two raters independently examined each guideline and completed the data collection tool. The data extracted by each rater were discussed at a research group consensus conference and agreement was reached on a final equity lens rating for each guideline.ResultsThirty-six guidelines were identified, one of which (2.8%) explicitly excluded persons with intellectual disabilities. Of the remaining 35, six (17.1%) met the first criterion of the equity lens, identifying persons with intellectual disabilities at high risk for the specific health problem. Eight guidelines (22.9%) contained any content on intellectual disabilities. Six guidelines addressed the fourth equity lens criterion, by giving specific consideration to the barriers to implementation of the guideline in disadvantaged populations. There were no guidelines that addressed the second, third, and fifth equity lens criteria.ConclusionsThe equity lens is a useful tool to systematically examine whether clinical guidelines address the health needs and inequities experienced by disadvantaged groups. Clinical guidelines are likely to further widen the health inequities experienced by persons with intellectual disabilities, and other disadvantaged groups, by being preferentially advantageous to the general population. There is a need to systematically incorporate methods to consider disadvantaged population groups into the processes used to develop clinical guidelines.