Search

Background: Little is known about the population prevalence of co‐occurring intellectual disabilities and autism, and its impact on general health status. The study aimed to investigate this, in comparison with the general population. Method: Whole country data from Scotland's Census, 2011, were analysed. Descriptive statistics were generated; chi‐squared tests were undertaken; and logistic regressions were undertaken both with the whole general population data, adjusted for age and gender, and within the population with co‐occurring intellectual disabilities and autism. Results: A total of 5709/5 295 403 (1.08/1000) people had co‐occurring intellectual disabilities and autism; 2.58/1000 children/young people and 0.74/1000 adults. The peak reported prevalence was at age 10 years (3.78/1000); 66.0% were male. Their general health status was substantially poorer than for the rest of the population, more so for children/young people, and they had more limitations in their day‐to‐day activities. Co‐occurring intellectual disabilities and autism had odds ratio = 48.8 (45.0–53.0) in statistically predicting poor health. Conclusion: This is the first study to report the population prevalence of coexisting intellectual disabilities and autism, and the substantial influence this double disadvantage has on general health status, apparent across the entire life course. This highlights a group in need of wider recognition for whom resources should be focused on and planned for, informed by evidence. Staff in services for people with either of these conditions need to be trained, equipped, resourced and prepared to address the challenge of working for people with this duality. This is essential, to address these substantial health inequalities. [ABSTRACT FROM AUTHOR]

Background Transition to adulthood may be a period of vulnerability for health for individuals with intellectual disabilities. No large-scale studies have compared the health of individuals with and without intellectual disabilities undergoing transition. The aims of this study were (1) to compare health during transition for individuals with and without intellectual disabilities across a whole country population and (2) to establish whether transition is associated with health in the population with intellectual disabilities. Methods Data were drawn from Scotland's Census, 2011. Frequency data were calculated for young people with and without intellectual disabilities. Logistic regressions were used to determine the extent to which intellectual disabilities account for seven health outcomes (general health, mental health, physical disabilities, hearing impairment, visual impairment, long-term illness and day-to-day activity limitations), adjusted for age and gender. Within the intellectual disabilities population, logistic regressions were then used to determine whether age group (13-18 or 19-24 years) is associated with the seven health outcomes, adjusted by gender. Results A total of 5556/815 889 young people aged 13-24 years had intellectual disabilities. Those with intellectual disabilities were 9.6-125.0 times more likely to have poor health on the seven outcomes. Within the population with intellectual disabilities, the 19- to 24-year-olds with intellectual disabilities were more likely to have mental health problems than the 13- to 18-year-olds, but did not have poorer health on the other outcomes. The difference between age groups for mental health problems was greater for young people who did not have intellectual disabilities, but their overall level of mental health problems was substantially lower than for the young people with intellectual disabilities. Conclusions This largest-to-date study quantifies the extent of the substantial health disparities experienced by young people with intellectual disabilities compared with people without intellectual disabilities. The young population with intellectual disabilities have substantial health problems; therefore, transition between child and adult services must be carefully planned in order to ensure that existing health conditions are managed and emerging problems minimised. [ABSTRACT FROM AUTHOR]

Background Research suggests that social exclusion is a problem both for people with intellectual disabilities (ID) and for people living in rural areas. This may give rise to a double disadvantage for people with ID living in rural areas. Conversely, aspects of rural life such as community spirit and social support may protect against social exclusion in this population. This study was designed to compare a number of measures of social exclusion in adults with ID living in rural and urban areas, with the aim of identifying whether a double disadvantage exists. Method Adults with ID were recruited from a rural and an urban area in Scotland. Participants participated in a face-to-face interview and their medical notes were accessed. Social exclusion was investigated using a number of measures comprising: daytime opportunities and physical access to community facilities (using part of the British Institute of Learning Disabilities questionnaire), recent contact with others and the quality of personal relationships (using a modified Interview Measure of Social Relationships questionnaire) and area deprivation by postcode (using the Scottish Index of Multiple Deprivation). The data were analysed using a series of binary logistic regression models that adjusted for variables including age, gender, level of ID, mental illhealth and common physical co-morbidities. Results A representative sample of adults with ID from rural ( n = 39) and urban ( n = 633) areas participated. Participants from rural areas were significantly more likely to have any regular daytime opportunity [odds ratio (OR) = 10.8, 95% CI = 2.3-51.5] including employment (OR = 22.1, 95% CI = 5.7-85.5) and attending resource centres (OR = 6.7, 95% CI = 2.6-17.2) than were participants from urban areas. They were also more likely to have been on holiday (OR = 17.8, 95% CI = 4.9-60.1); however, were less likely to use community facilities on a regular basis. Participants from urban and rural areas had a similar number of contacts with other people in a wide range of situations, but the quality of relationships may have been less close in rural areas. Finally, participants lived in significantly less deprived areas when in rural compared with urban areas (Mann-Whitney U = 7826, Z = −3.675, P ≤ 0.001). Conclusions These results suggest that adults with ID living in rural areas have better opportunities and live in less deprived areas than adults with ID living in urban areas. However, they may not hold such positive or close relationships, and this may be important when considering the subjective experience of social exclusion. [ABSTRACT FROM AUTHOR]

A correction to the article "Risk of anticholinergic burden in adults with intellectual disabilities: A Scottish retrospective cohort study of n = 17 200" in an issue is presented.

Background Important work has been carried out adapting cognitive behavioural therapy for people with intellectual disabilities. However, there is a lack of alternative psychological therapies available for people with intellectual disabilities and emotional difficulties. Behavioural activation for depression is less reliant on verbal communication and focuses on increasing purposeful activity and reducing avoidance. Method This feasibility study involved the development and piloting of an adapted manual of behavioural activation for people with intellectual disabilities. The intervention consisted of 10-12 sessions and a key adaptation was that the therapist worked with the clients alongside a significant other in their life, either a paid carer or family member. Baseline, post-intervention (3 months after entering the study) and 6-month quantitative follow-up data were obtained. Primary outcome data were gathered, concerning depressive symptoms, participants' levels of activity and general well-being. Results Twenty-three adults with intellectual disabilities with symptoms of depression were recruited from specialist health services. In terms of acceptability, the behavioural activation intervention was well received and only two individuals dropped out, with a further two lost to follow-up. The main measures of depression appeared to be sensitive to change. Pre- to post-intervention data showed a significant reduction in self-report of depressive symptoms with a strong effect size ( r = 0.78), that was maintained at follow-up ( r = 0.86). Positive change was also obtained for informant reports of depressive symptoms from pre- to post-intervention, with a strong effect size ( r = 0.7). Once again, this positive change was maintained at follow-up ( r = 0.72). Conclusions The study suggested that behavioural activation may be a feasible and worthwhile approach to tackling depression in people with intellectual disabilities. However, a randomised controlled trial would be required to establish its effectiveness, with more sensitive measurement of change in activity. [ABSTRACT FROM AUTHOR]

Abstract: Background: The International Summit on Intellectual Disability and Dementia (Glasgow, Scotland; October 2016) noted that advanced dementia can be categorised as that stage of dementia progression characterised by significant losses in cognitive and physical function, including a high probability of further deterioration and leading to death. Method: The question before the Summit was whether there were similarities and differences in expressions of advanced dementia between adults with intellectual disability (ID) and adults in the general population. Results: The Summit noted challenges in the staging of advanced dementia in people with ID with the criteria in measures designed to stage dementia in the general population heavily weighted on notable impairment in activities of daily living. For many people with an ID, there is already dependence in these domains generally related to the individuals pre‐existing level of intellectual impairment, that is, totally unrelated to dementia. Hence, the Summit agreed that as was true in achieving diagnosis, it is also imperative in determining advanced dementia that change is measured from the person's prior functioning in combination with clinical impressions of continuing and marked decline and of increasing co‐morbidity, including particular attention to late‐onset epilepsy in people with Down syndrome. It was further noted that quality care planning must recognise the greater likelihood of physical symptoms, co‐morbidities, immobility and neuropathological deterioration. Conclusions: The Summit recommended an investment in research to more clearly identify measures of person‐specific additional decline for ascertaining advanced dementia, inform practice guidelines to aid clinicians and service providers and identify specific markers that signal such additional decline and progression into advanced dementia among people with various levels of pre‐existing intellectual impairment. [ABSTRACT FROM AUTHOR]

Abstract: Background: Adults with intellectual disabilities (IDs) have consistently poorer health outcomes than the general population. There is evidence that routine health checks in primary care may improve outcomes. We conducted a randomised controlled trial of practice nurse led health checks. Here, we report findings from the nested qualitative study. Aim: To explore practice nurse perceptions and experience of delivering an anticipatory health check for adults with IDs. Design and Setting: Qualitative study in General Practices located in NHS Greater Glasgow and Clyde, Scotland, UK. Method: Eleven practice nurses from 11 intervention practices participated in a semi‐structured interview. Analysis was guided by a framework approach. Results: Practice nurses reported initially feeling ‘swamped’ and ‘baffled’ by the prospect of the intervention, but early misgivings were not realised. Health checks were incorporated into daily routines with relative ease, but this was largely contingent on existing patient engagement. The intervention was thought most successful with patients already well known to the practice. Chronic disease management models are commonly used by practice nurses and participants tailored health checks to existing practice. It emerged that few of the nurses utilised the breadth of the check instead modifying the check to respond to individual patients' needs. As such, already recognised ‘problems’ or issues dominated the health check process. Engaging with the health checks in this way appeared to increase the acceptability and feasibility of the check for nurses. There was universal support for the health check ethos, although some questioned whether all adults with IDs would access the health checks, and as a consequence, the long‐term benefits of checks. Conclusion: While the trial found the intervention to be dominant over standard health care, the adjustments nurses made may not have maximised potential benefits to patients. Increasing training could further improve the benefits that health checks provide for people with IDs. [ABSTRACT FROM AUTHOR]

Background People with intellectual disabilities ( ID) have high rates of psychiatric illness and are known to live in more deprived areas than the general population. This study investigated the relationship between area deprivation and contact with ID psychiatry. Method Psychiatric case notes and electronic records were used to identify all patients who had face-to-face contact with community ID psychiatric services over 1 year in the North East Community Health Partnership of Greater Glasgow and Clyde (estimated population 177 867). The Scottish Index of Multiple Deprivation ( SIMD) were determined for the patient sample and for the general population living in the same area. Results Between 1 June 2012 and 1 June 2013, 184 patients were seen by ID psychiatry over a total of 553 contacts, with valid SIMD data for 179 patients and 543 contacts. Fifty-two per cent of patients ( n = 93) lived in the most deprived SIMD decile, and 90.5% ( n = 152) in the lowest 5 deciles. Compared with the general population, there were significantly more patients than expected living in the most deprived decile ( Fisher's Exact test, P = 0.009) and in the most deprived 5 deciles ( Fisher's Exact test, P = 0.001). The median number of contacts was 2 (interquartile range = 1-3). There was no significant association between the number of contacts and SIMD decile. Forty-eight point one per cent ( n = 261) of all contacts were with patients living in the most deprived decile and 88.6% ( n = 481) in the most deprived 5 deciles. This was significantly more than expected compared with general population data ( Fisher's Exact test, P = 0.008 and Fisher's Exact test, P ≤ 0.001). Conclusions In the area under study, contact with ID psychiatry was greater in more deprived areas. Given the high psychiatric morbidity of people with ID, if services do not adjust for deprivation, this may lead to further discrimination in an already disadvantaged population. [ABSTRACT FROM AUTHOR]

The present paper describes a cross-sectional study of the psychosocial adjustment of 143 children with severe disability and their families identified from a regional case register for children with special needs. Thirty-eight per cent of the children had significant psychiatric morbidity. By contrast, the overall level of distress in carers was not that different from probable community prevalence figures. Nevertheless, distress among carers was consistently associated with increased disability in the child. Although respite care is a valuable resource for many carers, its use is indicative of underlying distress in the carer. [ABSTRACT FROM AUTHOR]

The case of a 50-year-old man with severe intellectual disability is described. After 20 years of institutional care, the subject was moved to a newly opened community group home. His physical and mental health deteriorated at this location after unproven allegations of sexual abuse which had taken place whilst he had been living in the institution. Although the subject's health continued to deteriorate, there was resistance to his re-admission to the same hospital for assessment. He had always needed to be cajoled into eating, but this approach had not been followed by the home which had contributed towards his weight loss. The situation the subject, the carers and the health personnel found themselves in illustrates how problematic it is to find the right balance between restrictive practices and respect for an individual's choice. [ABSTRACT FROM AUTHOR]

Background Leaving school is an important time for adolescents, with increasing autonomy and developing adult identities. The present study sought to shed light on the content and emotional impact of worries amongst adolescents with and without intellectual disabilities (IDs) at this time of change. Methods Twenty-five adolescents with mild to moderate IDs and 27 adolescents without IDs, aged 15 to 18 years, took part in the study. Participants' worries were elicited using a structured interview. The levels of rumination and distress related to their most salient worries were also examined, along with their self-reported levels of anxiety. Results Content analysis of the interviews identified differences between the worries of the two groups of participants, with the adolescents with IDs expressing more general worries about failure and personal threat. Level of distress about worries was positively correlated with anxiety in both groups. The adolescents with IDs were significantly more anxious than their non-disabled peers. Conclusions The differences between the groups' worries may be linked to differences in life experience and expectations. Consideration should be given to the specific worries of adolescents at the stage of leaving school. Doing so may allow solutions for their concerns to be identified, thus easing distress and leading to a less stressful transition. [ABSTRACT FROM AUTHOR]

Background Clinicians working with clients who have mild intellectual disabilities (IDs) have shown growing enthusiasm for using a cognitive behavioural approach, amid increasing evidence of good treatment outcomes for this client group. However, very little is known about the views and experiences of clients with IDs who have undergone cognitive behavioural therapy. This study aims to explore the perspective of these clients. Methods Fifteen participants with borderline to mild IDs and problems of anxiety, depression and anger were interviewed regarding their experience of cognitive behavioural therapy (CBT). Two semi-structured interviews were carried out in the first phase of therapy between session four and session nine. An interpretive phenomenological approach was taken to seek out themes from participants' own personal accounts. Results Participants valued the opportunity to talk about problems with their therapist and benefitted from therapeutic relationships characterised by warmth, empathy and validation. Participants identified areas of positive change; however, many thought that this may be short lived or not maintained beyond discharge. Conclusions The supportive aspects of therapeutic relationships were particularly important to participants undergoing CBT. The clinical implications are considered. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

Anxiety disorders are known to be common in the general population. Previous studies with adults with intellectual disabilities (IDs) report a prevalence of general anxiety disorder ranging from <2% to 17.4%. Little is known about associated factors in this population. This study investigates point prevalence of anxiety disorders and determines the factors independently associated with them. Information was collected with 1023 adults with IDs who participated in a large-scale, population-based study. All had a comprehensive physical and mental health assessment. The point prevalence of anxiety disorders according to different diagnostic criteria was determined, as were independently associated factors by using logistic regression analysis. Three point eight per cent (95% CI = 2.7-5.2%) of the cohort had an anxiety disorder at the time of assessment. Generalised anxiety disorder was the most common (1.7%), then agoraphobia (0.7%). Factors independently associated with having an anxiety disorder were not having any daytime employment, and having a recent history of life events. Having previously been a long-term hospital resident was independently associated with not having an anxiety disorder. Anxiety disorders are common in the ID population. At times of significant life events, it might be sensible for carers to consider proactively providing additional support and being vigilant to seek early health-care interventions should there be any suggestion of emerging mental ill-health. The study further highlights the range of mental ill-health that is experienced by the population with IDs, and therefore the need for appropriate care, supports and development of effective interventions. [ABSTRACT FROM AUTHOR]

Injuries are among the leading causes of death and disability in the world and a major public health concern. Falls are a common cause. Young persons with intellectual disabilities (ID) have a higher rate and different pattern of injuries than the general population, but little is known regarding adults. The aim of this study was to determine the incidence and types of injuries experienced by a community-based cohort of adults with ID ( n = 511) in a 12-month period. Face-to-face interviews were conducted with participants 2 years after they had first been recruited into a longitudinal study. Incidence of at least one injury in a 12-month period was 20.5% (105), of which 12.1% (62) was because of falls. Incident injury was predicted by having epilepsy and not having autism. Incident fall injury was predicted by urinary incontinence, while Down syndrome reduced risk. Adults with ID do experience a higher rate of injuries and falls when compared with the general population. The results of this study highlight this, and hence the need to work towards the development of interventions for injury and falls prevention in this population. [ABSTRACT FROM AUTHOR]

Background Previous analyses have found variable results when evaluating the size of the association between intellectual ability and adaptive functioning in individuals with impaired function. Methods We assessed the association between intellectual ability measured as a latent higher-order g and three different areas of adaptive functioning in a sample of clinically referred individuals with low IQ. Results Regressing g on conceptual, practical and social adaptive functioning yielded standardised regression coefficients of 0.65, 0.60 and 0.51 respectively. Conclusions Results suggests that even at low levels of ability, increments in g still have important consequences for human functioning. Further, the influence of g may not be equally strong across different areas of human functioning. [ABSTRACT FROM AUTHOR]

Background A small amount of research with individuals who have Williams Syndrome (WS) suggests that children with the condition may be vulnerable to sensory processing abnormalities and present with repetitive and restricted behaviours. Methods Parents of 21 children with WS aged 6-15 years completed a semi-structured interview designed to elicit the form, frequency, impact and developmental course of a range of sensory processing abnormalities and repetitive behaviours. Results Findings indicate that sensory processing difficulties are predominantly characterised by hypersensitivities, particularly in relation to vestibular, auditory, gustatory and proprioceptive functioning. Parents also reported the presence of a range of restricted and repetitive behaviours, which were often associated with their child's sensory symptoms. Conclusions This study makes a significant contribution to our understanding of sensory functioning and repetitive behaviours in WS. It also highlights the need for a multidisciplinary assessment of the difficulties experienced by children with the disorder. [ABSTRACT FROM AUTHOR]

Over the course of a week, vision clinics were conducted in the wards of Lennox Castle, one of the largest remaining mental handicap institutions in Scotland. Receptions and a seminar encouraged participation by staff and local services. A day Symposium at the Royal College of Physicians and Surgeons in Glasgow presented recent developments in medical care and facilitated discussion on methods of ensuring effective health surveillance, assessment and advisory services. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities (ID) are at high risk of developing respiratory health issues. The COVID‐19 pandemic has compounded this, with serious consequences, and for some, death. Despite home‐based oxygen saturation monitoring being recommended for people with ID, there is a stark lack of evidence in the literature on its feasibility. Method: We conducted 3‐day baseline home‐based oxygen saturation monitoring, using pulse oximeters, with eight parents of nine adults with ID in Scotland. Two eligible parents also completed a further 2 weeks of monitoring, and returned an evaluation questionnaire on its feasibility. Results: Baseline mean readings for eight adults with ID were within the normal range (%Sp02 ≥ 95), and for another one 94%. Fluctuations over the 3‐day assessment period were experienced by six of these individuals. However, these variations were within limits which are not dangerous (lowest reading 92%), implying that parental home‐based pulse oximetry monitoring is likely to be safe for adults with ID. The two parents who completed the evaluation found home‐based pulse oximetry monitoring to be easy/very easy to do, and effective/very effective. Conclusions: This is the first research study, albeit with a very small sample, to report on the potential feasibility of parental home‐based pulse oximetry monitoring for adults with ID. Home‐based pulse oximetry monitoring appears to be safe in adults with ID at risk of developing serious respiratory problems, and not difficult for their parents to do. There is an urgent need to replicate this work, using a larger sample, to promote home‐based respiratory health monitoring more widely for people with ID. [ABSTRACT FROM AUTHOR]

Background There have been significant concerns about the care and treatment of people with intellectual disabilities (ID) when attending general hospitals, which have led to inquiries that highlight service and systems failures. One response has been the development of Learning Disability Liaison Nursing (LDLN) Services across the UK that aim to ensure that additional, specialist support is available for patients, their carers and general healthcare professionals. Methods A mixed-methods study to investigate the impact of LDLN Services across four Scottish NHS boards was undertaken. In total, 323 referrals made over 18 months were analysed along with qualitative data drawn from interviews and focus groups with a sample of 85 participants including patients with ID ( n = 5), carers ( n = 16), primary care healthcare professionals ( n = 39) and general hospital professionals ( n = 19) and learning disability liaison nurses ( n = 6). Results The referral patterns to the four liaison nursing services closely matched the known health needs of adults with ID, with common admissions being due to neurological, respiratory and gastrointestinal issues. The LDLN role was seen to be complex and impacted on three key areas: (i) clinical patient care; (ii) education and practice development; and (iii) strategic organisational developments. Specific patient outcomes were linked to issues relating to capacity and consent to treatment, fostering person-centred adjustments to care, augmenting communication and the liaison nurses acting as positive role models and ambassadors for people with ID. Conclusions The LDLN Services were valued by stakeholders by achieving person-centred outcomes. With their expert knowledge and skills, the liaison nurses had an important role in developing effective systems and processes within general hospital settings. The outcomes highlight the importance of supporting and promoting LDLN Services and the challenges in delivering the multifaceted elements of the role. There is a need to take account of the complex and multidimensional nature of the LDLN role and the possible tensions between achieving clinical outcomes, education and practice developments and organisational strategic initiatives. [ABSTRACT FROM AUTHOR]

Background: Several drugs have anticholinergic side effects that are associated with adverse health outcomes. Anticholinergic burden studies in adults with intellectual disabilities (ID) have focused exclusively on older adults. This study investigates anticholinergic burden and its associations in adults with ID of all ages (17–94 years). Methods: Adults with ID (n = 4 305), each with three general population age–sex–neighbourhood‐matched controls (n = 12 915), were linked to their prescribed medications with anticholinergic effects between 2009 and 2017. Analyses were undertaken using logistic regression models. Results: Adults with ID were more likely to be prescribed any anticholinergic medicines, odds ratio (OR) = 1.49 (1.38–1.59), especially 'very strong' risk medicines, OR = 2.59 (2.39–2.81); 48.5% had very high total anticholinergic burden (3+) compared with 35.4% of the general population, OR = 1.77 (1.64–1.90). This group difference was greater for males, OR = 2.02 (1.84–2.22), than females, OR = 1.48 (1.33–1.65). Adults with ID had significantly higher odds of having very high total anticholinergic burden up to 75 years old, with the greatest group effect occurring in younger ages, 17‐24‐year‐olds, OR = 3.05 (2.39–3.89), and the extent of the difference decreased as age increased. The main effect of neighbourhood deprivation showed greater group differences with increasing affluence of neighbourhood. Results examining only the ID group showed that very high total anticholinergic burden was greatest for females, OR = 1.21 (1.07–1.37), and those over age 55, and extent of neighbourhood deprivation was not significant. Conclusions: Adults with ID are at higher risk of anticholinergic burden than the general population, especially young adults. Overall anticholinergic burden increased with age, but burden was high across all ages in the ID group. Very high total anticholinergic burden is prevalent across all types of neighbourhoods for the adults with ID, in contrast to the steeper gradient seen in the general population. Adults with ID have increased likelihood of unintended adverse effects, regardless of potential confounds, so clinicians undertaking medication reviews need to consider anticholinergic side effects and cumulative burden across concomitant medications, including in young adults with ID, not just older adults, and particularly women. [ABSTRACT FROM AUTHOR]