What effect does transition have on health and well-being in young people with intellectual disabilities? A systematic review

Background: Transition to adulthood might be a risk period for poor health in people with intellectual disabilities. However, we could find no synthesis of evidence on health and wellbeing outcomes during transition in this population. This review aimed to answer this question. Method: PRISMA/MOOSE guidelines were followed. Search terms were defined, electronic searches of six databases were conducted, reference lists and key journals were reviewed and grey literature was searched. Papers were selected based on clear inclusion criteria. Data was extracted from the selected papers, and their quality was systematically reviewed. The review was prospectively registered on PROSPERO: CRD42015016905. Results: 15,985 articles were extracted; of these 17 met the inclusion criteria. The results of these articles were mixed but suggested the presence of some health and wellbeing issues in this population during transition to adulthood, including obesity and sexual health issues. Conclusion: This review reveals a gap in the literature on transition and health, and points to the need for future work in this area

Health and wellbeing during transition to adulthood for young people with intellectual disabilities: a qualitative study

Background: Transition to adulthood may have negative consequences for health and wellbeing in individuals with intellectual disabilities (ID), but this aspect of transition has received little investigation. This qualitative study aimed to explore the transition experiences of individuals with ID from their own perspectives, and from that of their parents, in order to identify health or wellbeing implications of transition. Method: Semi-structured interviews were conducted with 17 young people with mild, moderate and severe ID aged 16–27 years and with 23 parents of young people with mild, moderate, severe and profound ID aged 16–26 years. Interviews were analysed using thematic analysis, deploying both emic and etic coding categories. Results: This study provides direct insights into the issues on health and wellbeing that young people with ID and their parents find important during transition. The primary health implication of transition centred on mental health and wellbeing; young people experienced heightened anxiety during transition, and themes identified as contributing to anxiety included: a lack of meaningful activity following school exit; inadequate support during transition; and difficulties associated with ‘growing up’. Problem behaviours and obesity were also implicated. Conclusion: The transition from school needs to be better supported in order to ease anxiety for young people during this difficult period

Long-term condition management in adults with intellectual disability in primary care: a systematic review

Background: Adults with intellectual disabilities have higher morbidity and earlier mortality than the general population. Access to primary health care is lower, despite a higher prevalence of many long-term conditions. Aim: To synthesise the evidence for the management of long-term conditions in adults with intellectual disabilities and identify barriers and facilitators to management in primary care. Design & setting: Mixed-methods systematic review. Method: Seven electronic databases were searched to identify both quantitative and qualitative studies concerning identification and management of long-term conditions in adults with intellectual disability in primary care. Both the screening of titles, abstracts, and full texts, and the quality assessment were carried out in duplicate. Findings were combined in a narrative synthesis. Results: Fifty-two studies were identified. Adults with intellectual disabilities are less likely than the general population to receive screening and health promotion interventions. Annual health checks may improve screening, identification of health needs, and management of long-term conditions. Health checks have been implemented in various primary care contexts, but the long-term impact on outcomes has not been investigated. Qualitative findings highlighted barriers and facilitators to primary care access, communication, and disease management. Accounts of experiences of adults with intellectual disabilities reveal a dilemma between promoting self-care and ensuring access to services, while avoiding paternalistic care. Conclusion: Adults with intellectual disabilities face numerous barriers to managing long-term conditions. Reasonable adjustments, based on the experience of adults with intellectual disability, in addition to intervention such as health checks, may improve access and management, but longer-term evaluation of their effectiveness is required

Umbrella systematic review of systematic reviews and meta-analyses on comorbid physical conditions in people with autism spectrum disorder

Background: Comorbid physical conditions may be more common in people with autism spectrum disorder (ASD) than other people. Aims: To identify what is and what is not known about comorbid physical conditions in people with ASD. Method: We undertook an umbrella systematic review of systematic reviews and meta-analyses on comorbid physical conditions in people with ASD. Five databases were searched. There were strict inclusion/exclusion criteria. We undertook double reviewing for eligibility, systematic data extraction and quality assessment. Prospective PROSPERO registration: CRD42015020896. Results: In total, 24 of 5552 retrieved articles were included, 15 on children, 1 on adults, and 8 both on children and adults. Although the quality of included reviews was good, most reported several limitations in the studies they included and considerable heterogeneity. Comorbid physical conditions are common, and some are more prevalent than in the general population: sleep problems, epilepsy, sensory impairments, atopy, autoimmune disorders and obesity. Asthma is not. However, there are substantial gaps in the evidence base. Fewer studies have been undertaken on other conditions and some findings are inconsistent. Conclusions: Comorbid physical conditions occur more commonly in people with ASD, but the evidence base is slim and more research is needed. Some comorbidities compound care if clinicians are unaware, for example sensory impairments, given the communication needs of people with ASD. Others, such as obesity, can lead to an array of other conditions, disadvantages and early mortality. It is essential that potentially modifiable physical conditions are identified to ensure people with ASD achieve their best outcomes. Heightening clinicians’ awareness is important to aid in assessments and differential diagnoses, and to improve healthcare

Pregnancy outcome following prenatal diagnosis of chromosomal anomaly: a record linkage study of 26,261 pregnancies

Previous studies have demonstrated the influence of changes in the age at which women give birth, and of developments in prenatal screening and diagnosis on the number of pregnancies diagnosed and terminated with chromosomal anomalies. However, we are unaware of any population studies examining pregnancy terminations after diagnosis of chromosomal anomalies that has included all aneuploidies and the influence of maternal factors. The aims of this study were to examine the association between results of prenatal tests and pregnancy termination, and the proportion of foetuses with and without chromosomal anomalies referred for invasive diagnostic tests over time. Diagnostic information of 26,261 prenatal invasive tests from all genetic service laboratories in Scotland from 2000 to 2011 was linked to Scottish Morbidity Records to obtain details on pregnancy outcome. Binary logistic regression was carried out to test the associations of year and type of diagnosis with pregnancy termination, while controlling for maternal age, neighbourhood deprivation and parity. There were 24,155 (92.0%) with no chromosomal anomalies, 1,483 (5.6%) aneuploidy diagnoses, and 623 (2.4%) diagnoses of anomaly that was not aneuploidy (including translocations and single chromosome deletions). In comparison with negative test results, pregnancies diagnosed with trisomy were most likely to be terminated (adjusted OR 437.40, 95% CI 348.19–549.46) followed by other aneuploid anomalies (adjusted OR 95.94, 95% CI 69.21–133.01). During the study period, fewer pregnancies that were diagnosed with aneuploidy were terminated, including trisomy diagnoses (adjusted OR 0.44, 95% CI 0.26–0.73). Older women were less likely to terminate (OR 0.35, 95% CI 0.28, 0.42), and parity was also an independent predictor of termination. In keeping with previous findings, while the number of invasive diagnostic tests declined, the proportion of abnormal results increased from 6.09% to 10.88%. Systematic advances in prenatal screening have improved detection rates for aneuploidy. This has been accompanied by a reduction in the rate of termination for aneuploidy. This may reflect societal changes with acceptance of greater diversity, but this is speculation, and further research would be needed to test this

Five-minute Apgar score and educational outcomes: retrospective cohort study of 751 369 children

Background: The Apgar score is used worldwide for assessing the clinical condition and short-term prognosis of newborn infants. Evidence for a relationship with long-term educational outcomes is conflicting. We investigated whether Apgar score at 5 min after birth was associated with additional support needs (ASN) and educational attainment. Methods: Data on pregnancy, delivery and later educational outcomes for children attending Scottish schools between 2006 and 2011 were collated by linking individual-level data from national educational and maternity databases. The relationship between Apgar score and overall ASN, type-specific ASN and educational attainment was assessed using binary, multinomial and generalised ordinal logistic regression models, respectively. Missing covariate data were imputed. Results: Of the 751 369 children eligible, 9741 (1.3%) had a low or intermediate Apgar score and 49 962 (6.6%) had ASN. Low Apgar score was independently associated with overall ASN status (adjusted OR for Apgar ≤3, OR 1.52 95% CI 1.35 to 1.70), as well as ASN due to cognitive (OR 1.26, 95% CI 1.09 to 1.47), sensory (OR 2.49 95% CI 1.66 to 3.73) and motor (OR 3.57, 95% CI 2.86 to 4.47) impairments. There was a dose-response relationship between Apgar score and overall ASN status: of those scoring 0–3, 10.1% had ASN, compared with 9.1% of those scoring 4–7 and 6.6% of those scoring 7–10. A low Apgar score was associated with lower educational attainment, but this was not robust to adjustment for confounders. Conclusions: Apgar scores are associated with long-term as well as short-term prognoses, and with educational as well as clinical outcomes at the population level

Prevalence of mental health conditions and relationship with general health in a whole-country population of people with intellectual disabilities compared with the general population

Background: There are no previous whole-country studies on mental health and relationships with general health in intellectual disability populations; study results vary. Aims: To determine the prevalence of mental health conditions and relationships with general health in a total population with and without intellectual disabilities. Method: Ninety-four per cent completed Scotland’s Census 2011. Data on intellectual disabilities, mental health and general health were extracted, and the association between them was investigated. Results: A total of 26 349/5 295 403 (0.5%) had intellectual disabilities. In total, 12.8% children, 23.4% adults and 27.2% older adults had mental health conditions compared with 0.3, 5.3 and 4.5% of the general population. Intellectual disabilities predicted mental health conditions; odds ratio (OR)=7.1 (95% CI 6.8–7.3). General health was substantially poorer and associated with mental health conditions; fair health OR=1.8 (95% CI 1.7–1.9), bad/very bad health OR=4.2 (95% CI 3.9–4.6). Conclusions: These large-scale, whole-country study findings are important, given the previously stated lack of confidence in comparative prevalence results, and the need to plan services accordingly

Trends and variations in per capita expenditure on adult intellectual disabilities health and social care across Scotland, and by urban/rural class

Background: Following the global financial crisis in 2007/08, the UK implemented an austerity programme which may impact on services. Scotland comprises both densely-populated urban conurbations and highly-dispersed remote rural and island communities. Methods: Expenditure data were extracted from Scottish Government statistics. Per capita expenditure was calculated using adjusted Scotland’s 2011 census data. Results: There was a 3.41% decrease in real term expenditure on adult intellectual disabilities services between 2012/13 and 2014/15 (>£32million). In 2014/15, per capita expenditure on adult intellectual disabilities health care ranged from £1,211-£17,595; social care from £21,147-£83,831; combined health and social care expenditures from £37,703-£85,929. Per capita expenditure on combined health and social care was greater in rural areas; with more on intellectual disabilities social care, though less on health care. Conclusions: Scottish expenditure on adult intellectual disabilities services has not kept abreast of rising living costs. It varies considerably across the country: a post-code lottery

Incidence of unipolar and bipolar depression, and mania in adults with intellectual disabilities: prospective cohort study

Background: Incidence and determinants of affective disorders among adults with intellectual disabilities are unknown. Aims: To investigate affective disorder incidence, and determinants of unipolar depression, compared with general population reports. Method: Prospective cohort study measuring mental ill health of adults with mild to profound intellectual disabilities living within a defined community, over 2 years. Results: There was 70% cohort retention (n = 651). Despite high mood stabiliser use (22.4%), 2-year incident mania at 1.1% is higher than the general population; 0.3% for first episode (standardised incident ratio (SIR) = 41.5, or 52.7 excluding Down syndrome). For any bipolar episode the SIR was 2.0 (or 2.5 excluding Down syndrome). Depression incidence at 7.2% is similar to the general population (SIR = 1.2), suggesting more enduring/undertreatment given the higher prevalence. Problem behaviours (odds ratio (OR) = 2.3) and life events (OR = 1.3) predict incident unipolar depression. Conclusions: Depression needs improved treatment. Mania has received remarkably little attention in this population, despite high prevalence and incidence (similar to schizophrenia), and given the importance of clinician awareness for accurate differential diagnosis from attention-deficit hyperactivity disorder and problem behaviours

Prevalence of mental health conditions, sensory impairments and physical disability in people with co-occurring intellectual disabilities and autism compared with other people: a cross-sectional total population study in Scotland

Objectives: To investigate prevalence of mental health conditions, sensory impairments and physical disability in children, adults and older adults with co-occurring intellectual disabilities and autism, given its frequent co-occurrence, compared with the general population. Design: Whole country cohort study. Setting: General community. Participants: 5709 people with co-occurring intellectual disabilities and autism, compared with 5 289 694 other people. Outcome measures: Rates and ORs with 95% CIs for mental health conditions, visual impairment, hearing impairment and physical disability in people with co-occurring intellectual disabilities and autism compared with other people, adjusted for age, sex and interaction between age and co-occurring intellectual disabilities and autism. Results: All four long-term conditions were markedly more common in children, adults and older adults with co-occurring intellectual disabilities and autism compared with other people. For mental health, OR=130.8 (95% CI 117.1 to 146.1); visual impairment OR=65.9 (95% CI 58.7 to 73.9); hearing impairment OR=22.0 (95% CI 19.2 to 25.2); and physical disability OR=157.5 (95% CI 144.6 to 171.7). These ratios are also greater than previously reported for people with either intellectual disabilities or autism rather than co-occurring intellectual disabilities and autism. Conclusions: We have quantified the more than double disadvantage for people with co-occurring intellectual disabilities and autism, in terms of additional long-term health conditions. This may well impact on quality of life. It raises challenges for staff working with these people in view of additional complexity in assessments, diagnoses and interventions of additional health conditions, as sensory impairments and mental health conditions in particular, compound with the persons pre-existing communication and cognitive problems in this context. Planning is important, with staff being trained, equipped, resourced and prepared to address the challenge of working for people with these conditions