Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: cross-sectional study.
ABSTRACT: OBJECTIVES:To investigate the prevalence of multimorbidity in adults with intellectual disabilities with and without Down syndrome. DESIGN:Large, population-based cross-sectional study. SETTING:The geographical area of one Health Board, Scotland. PARTICIPANTS:All adults (aged 16+ years) known to general practitioners to have intellectual disabilities and adults receiving services provided or paid by intellectual disabilities health or social work services. 1023/1562 potential participants took part (65.5%); 562 (54.9%) men and 461 (45.1%) women, aged 43.9 years (16-83 years). 186 had Down syndrome and 837 did not. MAIN OUTCOME MEASURES:The prevalence of International Statistical Classification of Diseases, 10th revision, physical health conditions and multimorbidity detected at a comprehensive health assessment. RESULTS:The mean number of physical health conditions/participant was 11.04, and 98.7% had multimorbidity. The most prevalent conditions are painful and/or disabling and, in some cases, life threatening. The five most prevalent were visual impairment, obesity, epilepsy, constipation and ataxic/gait disorders. The pattern of multimorbidity differs from that seen in the general population and is spread across the entire adult life course. The extent of multimorbidity in the adults with Down syndrome was similar to that of the adults without Down syndrome, while the prevalence of individual conditions differed. CONCLUSIONS:This robustly designed study with a large population found an extremely high prevalence of multimorbidity in adults with intellectual disabilities across the entire adult life course. This increases complexity of medical management that secondary healthcare services and medical education are not yet geared towards, as these tend to focus on single conditions. This is in addition to complexity due to limitations in communication and understanding. As the physical conditions within their multimorbidity also differ from that seen in the older general population, urgent attention is needed to develop the care pathways and guidelines that are required to inform and so improve their healthcare.
Project description:OBJECTIVES:To investigate mortality in adults with intellectual disabilities: rates, causes, place, demographic and clinical predictors. DESIGN:Cohort study with record linkage to death data. SETTING:General community. PARTICIPANTS:961/1023 (94%) adults (16-83 years; mean=44.1 years; 54.6% male) with intellectual disabilities, clinically examined in 2001-2004; subsequently record-linked to their National Health Service number, allowing linkage to death certificate data, 2018. OUTCOME MEASURES:Standardised mortality ratios (SMRs), underlying and all contributing causes of death, avoidable deaths, place, and demographic and clinical predictors of death. RESULTS:294/961 (30.6%) had died; 64/179 (35.8%) with Down syndrome, 230/783 (29.4%) without Down syndrome. SMR overall=2.24 (1.98, 2.49); Down syndrome adults=5.28 (3.98, 6.57), adults without Down syndrome=1.93 (1.68, 2.18); male=1.69 (1.42, 1.95), female=3.48 (2.90, 4.06). SMRs decreased as age increased. More severe intellectual disabilities increased SMR, but ability was not retained in the multivariable model. SMRs were higher for most International Statistical Classification of Diseases and Related Health Problems, 10th Revision chapters. For adults without Down syndrome, aspiration/reflux/choking and respiratory infection were the the most common underlying causes of mortality; for Down syndrome adults 'Down syndrome', and dementia were most common. Amenable deaths (29.8%) were double that in the general population (14%); 60.3% died in hospital. Mortality risk related to percutaneous endoscopic gastrostomy/tube fed, Down syndrome, diabetes, lower respiratory tract infection at cohort-entry, smoking, epilepsy, hearing impairment, increasing number of prescribed drugs, increasing age. Bowel incontinence reduced mortality risk. CONCLUSIONS:Adults with intellectual disabilities with and without Down syndrome have different SMRs and causes of death which should be separately reported. Both die younger, from different causes than other people. Some mortality risks are similar to other people, with earlier mortality reflecting more multimorbidity; amenable deaths are also common. This should inform actions to reduce early mortality, for example, training to avoid aspiration/choking, pain identification to address problems before they are advanced, and reasonable adjustments to improve healthcare quality.
Project description:OBJECTIVES:To determine the relative extent that autism and intellectual disabilities are independently associated with poor mental and general health, in children and adults. DESIGN:Cross-sectional study. For Scotland's population, logistic regressions investigated odds of intellectual disabilities and autism predicting mental health conditions, and poor general health, adjusted for age and gender. PARTICIPANTS:1 548 819 children/youth aged 0-24 years, and 3 746 584 adults aged more than 25 years, of whom 9396/1 548 819 children/youth had intellectual disabilities (0.6%), 25 063/1 548 819 children/youth had autism (1.6%); and 16 953/3 746 584 adults had intellectual disabilities (0.5%), 6649/3 746 584 adults had autism (0.2%). These figures are based on self-report. MAIN OUTCOME MEASURES:Self-reported general health status and mental health. RESULTS:In children/youth, intellectual disabilities (OR 7.04, 95% CI 6.30 to 7.87) and autism (OR 25.08, 95% CI 23.08 to 27.32) both independently predicted mental health conditions. In adults, intellectual disabilities (OR 3.50, 95% CI 3.20 to 3.84) and autism (OR 5.30, 95% CI 4.80 to 5.85) both independently predicted mental health conditions. In children/youth, intellectual disabilities (OR 18.34, 95% CI 17.17 to 19.58) and autism (OR 8.40, 95% CI 8.02 to 8.80) both independently predicted poor general health. In adults, intellectual disabilities (OR 7.54, 95% CI 7.02 to 8.10) and autism (OR 4.46, 95% CI 4.06 to 4.89) both independently predicted poor general health. CONCLUSIONS:Both intellectual disabilities and autism independently predict poor health, intellectual disabilities more so for general health and autism more so for mental health. Intellectual disabilities and autism are not uncommon, and due to their associated poor health, sufficient services/supports are needed. This is not just due to coexistence of these conditions or just to having intellectual disabilities, as the population with autism is independently associated with substantial health inequalities compared with the general population, across the entire life course.
Project description: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.
Project description:<h4>Objectives</h4>To investigate the prevalence of comorbid mental health conditions and physical disabilities in a whole country population of adults aged 25+ with?and without reported autism.<h4>Design</h4>Secondary analysis of Scotland's Census, 2011 data. Cross-sectional study.<h4>Setting</h4>General population.<h4>Participants</h4>94% of Scotland's population, including 6649/3 746 584 adults aged 25+ reported?to have autism.<h4>Main outcome measures</h4>Prevalence of six comorbidities: deafness or partial hearing loss, blindness or partial sight loss, intellectual disabilities, mental health conditions, physical disability and other condition; ORs (95% CI) of autism predicting these comorbidities, adjusted for age and gender; and OR for age and gender in predicting comorbidities within the population with reported autism.<h4>Results</h4>Comorbidities were common: deafness/hearing loss-14.1%; blindness/sight loss-12.1%; intellectual disabilities-29.4%; mental health conditions-33.0%; physical disability-24.0%; other condition-34.1%. Autism statistically predicted all of the conditions: OR 3.3 (95% CI 3.1 to 3.6) for deafness or partial hearing loss, OR 8.5 (95% CI 7.9 to 9.2) for blindness or partial sight loss, OR 94.6 (95% CI 89.4 to 100.0) for intellectual disabilities, OR 8.6 (95% CI 8.2 to 9.1) for mental health conditions, OR 6.2 (95% CI 5.8 to 6.6) for physical disability and OR 2.6 (95% CI 2.5 to 2.8) for other condition. Contrary to findings within the general population, female gender predicted all conditions within the population with reported autism, including intellectual disabilities (OR=1.4).<h4>Conclusions</h4>Clinicians need heightened awareness of comorbidities in adults with autism to improve detection and suitable care, especially given the added complexity of assessment in this population and the fact that hearing and visual impairments may cause additional difficulties with reciprocal communication which are also a feature of autism; hence posing further challenges in assessment.
Project description:BACKGROUND:Multimorbidity is a global health issue, particularly for older adults in the primary care setting. An adequate portrayal of its epidemiology is essential to properly identify and understand the health care needs of this population. This study aimed to compare the differences in the prevalence of selected chronic conditions and multimorbidity, including its associated characteristics, using health survey/self-reported (SR) information only, administrative (Adm) data only and the combined (either) sources. METHODS:This was a secondary analysis of survey data from the first cycle of the Longitudinal Survey on Senior's Health and Health Services Use linked to health-Adm data. The analytical sample consisted of 1625 community-dwelling older adults (≥65 years) recruited in the waiting rooms of primary health clinics in a selected administrative region of the province of Quebec. Seventeen chronic conditions were assessed according to two different data sources. We examined the differences in the observed prevalence of chronic conditions and multimorbidity and the agreement between data sources. RESULTS:The prevalence of each of the 17 chronic conditions ranged from 1.2 to 68.7% depending on the data source. The agreement between different data sources was highly variable, with kappa coefficients (κ) ranging from 0.05 to 0.73. Multimorbidity was very high in this population, with an estimated prevalence of up to 95.9%. In addition, we found that the association between sociodemographic and behavioural factors and the presence of multimorbidity varied according to the different data sources and thresholds. CONCLUSIONS:This is the first study to simultaneously investigate chronic conditions and multimorbidity prevalence among primary care older adults using combined SR and health-Adm data. Our results call attention to (1) the possibility of underestimating cases when using a single data source and (2) the potential benefits of integrating information from different data sources to increase case identification. This is an important aspect of characterizing the health care needs of this fast-growing population.
Project description:Frequent mental distress, defined as 14 or more self-reported mentally unhealthy days in the past 30 days,* is associated with adverse health behaviors, increased use of health services, mental disorders (e.g., diagnosis of major depressive disorder), chronic diseases, and functional limitations (1). Adults with disabilities more often report depression and anxiety (2), reduced health care access (3), and health-related risk behaviors (4) than do adults without disabilities. CDC analyzed 2018 Behavioral Risk Factor Surveillance System (BRFSS) data to compare the prevalence of frequent mental distress among adults with disabilities with that among adults without disabilities and to identify factors associated with mental distress among those with disabilities. Nationwide, an estimated 17.4 million adults with disabilities reported frequent mental distress; the prevalence of reported mental distress among those with disabilities (32.9%) was 4.6 times that of those without disabilities (7.2%). Among adults with disabilities, those with both cognitive and mobility disabilities most frequently reported mental distress (55.6%). Adults with disabilities who reported adverse health-related characteristics (e.g., cigarette smoking, physical inactivity, insufficient sleep, obesity, or depressive disorders) or an unmet health care need because of cost also reported experiencing more mental distress than did those with disabilities who did not have these characteristics. Adults living below the federal poverty level reported mental distress 70% more often than did adults in higher income households. Among states, age-adjusted prevalence of mental distress among adults with disabilities ranged from 25.2% (Alaska) to 42.9% (New Hampshire). Understanding the prevalence of mental distress among adults with disabilities could help health care providers, public health professionals, and policy makers target interventions and inform programs and policies to ensure receipt of mental health screening, care, and support services to reduce mental distress among adults with disabilities.
Project description:<h4>Objective</h4>To determine whether coding a developmental disability as the underlying cause of death obscures mortality trends of adults with developmental disability.<h4>Design</h4>National Vital Statistics System 2012-2016 US Multiple Cause-of-Death Mortality files.<h4>Setting</h4>USA.<h4>Participants</h4>Adults with a developmental disability indicated on their death certificate aged 18 through 103 at the time of death. The study population included 33?154 adults who died between 1 January 2012 and 31 December 2016.<h4>Primary outcome and measures</h4>Decedents with a developmental disability coded as the underlying cause of death on the death certificate were identified using the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision code for intellectual disability, cerebral palsy, Down syndrome or other developmental disability. Death certificates that coded a developmental disability as the underlying cause of death were revised using a sequential underlying cause of death revision process.<h4>Results</h4>There were 33?154 decedents with developmental disability: 7901 with intellectual disability, 11?895 with cerebral palsy, 9114 with Down syndrome, 2479 with other developmental disabilities and 1765 with multiple developmental disabilities. Among all decedents, 48.5% had a developmental disability coded as the underlying cause of death, obscuring higher rates of choking deaths among all decedents and dementia and Alzheimer's disease among decedents with Down syndrome.<h4>Conclusion</h4>Death certificates that recorded the developmental disability in Part I of the death certificate were more likely to code disability as the underlying cause of death. While revising these death certificates provides a short-term corrective to mortality trends for this population, the severity and extent of this problem warrants a long-term change involving more precise instructions to record developmental disabilities only in Part II of the death certificate.
Project description:(1) To evaluate the prevalence of polypharmacy (5-9 medicines) and excessive polypharmacy (10+ medicines) and (2) to determine associated demographic and clinical characteristics in an ageing population with intellectual disabilities (IDs).Observational cross-sectional study.Wave One (2009/2010) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA).A nationally representative sample of 753 persons with ID, aged between 41 and 90 years. Participants/proxy reported medicines (prescription and over the counter) taken on a regular basis; medication data was available for 736 participants (98%).Participants were divided into those with no polypharmacy (0-4 medicines), polypharmacy (5-9 medicines) and excessive polypharmacy (10+ medicines). Medication use patterns were analysed according to demographic variables and reported chronic conditions. A multinomial logistic regression model identified factors associated with polypharmacy (5-9 medicines) and excessive polypharmacy (≥10 medicines).Overall, 90% of participants reported use of medicines. Polypharmacy was observed in 31.5% of participants and excessive polypharmacy in 20.1%. Living in a residential institution, and reporting a mental health or neurological condition were strongly associated with polypharmacy and excessive polypharmacy after adjusting for confounders, but age or gender had no significant effect.Polypharmacy was commonplace for older adults with ID and may be partly explained by the high prevalence of multimorbidity reported. Review of appropriateness of medication use is essential, as polypharmacy places ageing people with ID at risk of adverse effects.
Project description:<h4>Background</h4>As the prevalence of older adults with multimorbidity increases, greater integration of services is necessary to manage the physical and psycho-social needs of this cohort. This study describes and summarises current evidence, clinical provision and progress towards integrated primary care and social services for older adults with multimorbidity in England.<h4>Methods</h4>A scoping review was conducted involving systematic searches of a range of electronic academic and policy databases. Articles were screened and extracted in duplicate by two independent reviewers. Data were extracted onto a charting sheet and thematic synthesis was used to summarise findings. Articles were included if published in English and related to primary care, social care and multimorbidity in older adults in England. Conceptually, the review was framed using the Rainbow Model of Integrated Care.<h4>Results</h4>The search yielded 7656 articles of which 84 were included. Three themes were identified: (1) a focus on individual level services rather than multi-level or multi-sector integration, with an increasing emphasis on the need to consider broader determinants of population health as critical to integrated care for older adults with multimorbidity; (2) the need for policymakers to allow time for integration to embed, to enable new structures and relationships to develop and mature; and (3) the inherent tension between top-down and bottom-up driven approaches to integrated care requires a whole-systems structure, while allowing for local flexibilities.<h4>Conclusions</h4>There is limited evidence of multi-level and multi-sector integration of services for older adults with multimorbidity in England. The literature increasingly acknowledges wider determinants of population health that are likely to require integration beyond primary care and social services. Improving clinical care in one or two sectors may not be as effective as simultaneously improving the organisation or design across services as one single system of provision. This may take time to establish and will require local input.
Project description:<h4>Background</h4>Alzheimer's disease and its complications are the leading cause of death in adults with Down syndrome. Studies have assessed Alzheimer's disease in individuals with Down syndrome, but the natural history of biomarker changes in Down syndrome has not been established. We characterised the order and timing of changes in biomarkers of Alzheimer's disease in a population of adults with Down syndrome.<h4>Methods</h4>We did a dual-centre cross-sectional study of adults with Down syndrome recruited through a population-based health plan in Barcelona (Spain) and through services for people with intellectual disabilities in Cambridge (UK). Cognitive impairment in participants with Down syndrome was classified with the Cambridge Cognitive Examination for Older Adults with Down Syndrome (CAMCOG-DS). Only participants with mild or moderate disability were included who had at least one of the following Alzheimer's disease measures: apolipoprotein E allele carrier status; plasma concentrations of amyloid β peptides 1-42 and 1-40 and their ratio (Aβ<sub>1-42/1-40</sub>), total tau protein, and neurofilament light chain (NFL); tau phosphorylated at threonine 181 (p-tau), and NFL in cerebrospinal fluid (CSF); and one or more of PET with <sup>18</sup>F-fluorodeoxyglucose, PET with amyloid tracers, and MRI. Cognitively healthy euploid controls aged up to 75 years who had no biomarker abnormalities were recruited from the Sant Pau Initiative on Neurodegeneration. We used a first-order locally estimated scatterplot smoothing curve to determine the order and age at onset of the biomarker changes, and the lowest ages at the divergence with 95% CIs are also reported where appropriate.<h4>Findings</h4>Between Feb 1, 2013, and June 28, 2019 (Barcelona), and between June 1, 2009, and Dec 31, 2014 (Cambridge), we included 388 participants with Down syndrome (257 [66%] asymptomatic, 48 [12%] with prodromal Alzheimer's disease, and 83 [21%] with Alzheimer's disease dementia) and 242 euploid controls. CSF Aβ<sub>1-42/1-40</sub> and plasma NFL values changed in individuals with Down syndrome as early as the third decade of life, and amyloid PET uptake changed in the fourth decade. <sup>18</sup>F-fluorodeoxyglucose PET and CSF p-tau changes occurred later in the fourth decade of life, followed by hippocampal atrophy and changes in cognition in the fifth decade of life. Prodromal Alzheimer's disease was diagnosed at a median age of 50·2 years (IQR 47·5-54·1), and Alzheimer's disease dementia at 53·7 years (49·5-57·2). Symptomatic Alzheimer's disease prevalence increased with age in individuals with Down syndrome, reaching 90-100% in the seventh decade of life.<h4>Interpretation</h4>Alzheimer's disease in individuals with Down syndrome has a long preclinical phase in which biomarkers follow a predictable order of changes over more than two decades. The similarities with sporadic and autosomal dominant Alzheimer's disease and the prevalence of Down syndrome make this population a suitable target for Alzheimer's disease preventive treatments.<h4>Funding</h4>Instituto de Salud Carlos III, Fundació Bancaria La Caixa, Fundació La Marató de TV3, Medical Research Council, and National Institutes of Health.