Dataset Information

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.

SUBMITTER: Kinnear D

PROVIDER: S-EPMC5829598 | biostudies-literature | 2018 Feb

REPOSITORIES: biostudies-literature

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Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: cross-sectional study.

Kinnear Deborah D Morrison Jill J Allan Linda L Henderson Angela A Smiley Elita E Cooper Sally-Ann SA

BMJ open 20180205 2

<h4>Objectives</h4>To investigate the prevalence of multimorbidity in adults with intellectual disabilities with and without Down syndrome.<h4>Design</h4>Large, population-based cross-sectional study.<h4>Setting</h4>The geographical area of one Health Board, Scotland.<h4>Participants</h4>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 ...[more]

PMID: 29431619

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Project description:ObjectivesTo investigate mortality in adults with intellectual disabilities: rates, causes, place, demographic and clinical predictors.DesignCohort study with record linkage to death data.SettingGeneral community.Participants961/1023 (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 measuresStandardised mortality ratios (SMRs), underlying and all contributing causes of death, avoidable deaths, place, and demographic and clinical predictors of death.Results294/961 (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.ConclusionsAdults 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:ImportanceImproving equity in organ transplant access for people with intellectual and developmental disabilities (IDD) is a topic of social discourse in mainstream media, state legislation, and national legislation. However, few studies have compared evaluation rates, transplant rates, and outcomes among adults with and without IDD.ObjectiveTo compare rates of kidney transplant and transplant-specific outcomes between propensity-score matched groups of adults with end-stage kidney disease (ESKD [also referred to as end-stage renal disease (ESRD)]) with and without co-occurring IDD.Design, setting, and participantsThis retrospective cohort study included all Medicare inpatient and outpatient standard analytical files from 2013 through 2020. A total of 1 413 655 adult Medicare beneficiaries with ESKD were identified. Propensity-score matching was used to balance cohorts based on age, sex, race, follow-up duration, and Charlson Comorbidity Index. The matched cohorts consisted of 21 384 adults with ESKD (10 692 of whom had IDD) and 1258 kidney transplant recipients (629 of whom had IDD). Data were analyzed between June 1, 2022, and August 1, 2022.ExposureIDD.Main outcomes and measuresEvaluation for kidney transplant, receipt of kidney transplant, perioperative complications, readmission, mortality, graft rejection, and graft failure.ResultsOf the 21 384 propensity-score matched adults with ESKD, the median (IQR) age was 55 (43-65) years, 39.2% were male, 27.4% were Black, 64.1% were White, and 8.5% identified as another race or ethnicity. After propensity score matching within the ESKD cohort, 633 patients with IDD (5.9%) received a kidney transplant compared with 1367 of adults without IDD (12.8%). Adults with IDD were 54% less likely than matched peers without IDD to be evaluated for transplant (odds ratio, 0.46; 95% CI, 0.43-0.50) and 62% less likely to receive a kidney transplant (odds ratio, 0.38; 95% CI, 0.34-0.42). Among matched cohorts of kidney transplant recipients, rates of perioperative complications, readmission, and graft failure were similar for adults with and without IDD.Conclusions and relevanceUsing the largest cohort of adult kidney transplant recipients with IDD to date, the study team found that rates of evaluation and transplant were lower despite yielding equivalent outcomes. These data support consideration of adults with IDD for kidney transplant and underscore the urgent need for antidiscrimination initiatives to promote the receipt of equitable care for this population.

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:BackgroundPeople with intellectual disabilities (ID) have lower levels of physical activity and quality of life and they have a lot of barriers to face when taking part in physical activity. Other problems are the poor adherence to physical activity such people have so this study is designed to improve adherence to physical activity for people with intellectual disabilities with the assistance of an application for smartphones. The aim of the study will be to improve physical activity and physical condition after multimodal intervention and to analyse the promotion of adherence to physical activity through a multimodal intervention and an app intervention (mHealth) in people with ID.MethodsA two-stage study will be conducted. In stage 1 a multimodal intervention will take place will be done with physical activity and educational advice over eight weeks, two days a week. Data will be measured after and before the intervention. In stage 2 a randomized controlled trial will be conducted. In the intervention group we will install an application to a smartphone; this application will be a reminder to do a physical activity and they have to select whether they have or haven't done a physical activity every day. This application will be installed for 18 weeks. Data will be measured after and before the application is installed in two groups. We will measure results 10 weeks later when the two groups don't have the reminder. The principal outcome used to measure the adherence to physical activity will be the International Physical Activity Questionnaire; secondary outcomes will be a fun-fitness test and self-report survey about quality of life, self-efficacy and social support. Samples will be randomized by sealed envelope in two groups, with approximately 20 subjects in each group. It's important to know that the therapist will be blinded and won't know the subjects of each group.DiscussionOffering people with ID a multimodal intervention and tool to increase the adherence to a physical activity may increase the levels of physical activity and quality of life. Such a scheme, if beneficial, could be implemented successfully within public health sense.Trial registrationClinicalTrials.gov Identifier: NCT01915381.

Project description:BACKGROUND:Botswana is currently undergoing rapid epidemiological transition indicated by a decline in infectious diseases and an increase in chronic non-communicable diseases and their associated risk factors. The main aim of this study was to assess prevalence and correlates of multimorbidity among the adult population in Botswana. METHODS:A cross-sectional study called Chronic Non-Communicable Diseases Study (NCDs study) was conducted in March, 2016. Using multistage cross sectional sampling design, 1178 male and female respondents aged 15 years and above were interviewed across 3 cities and towns, 15 urban villages and 15 rural villages. Participants were interviewed face-to-face using a structured questionnaire. Adjusted multinomial logistic regression analysis was used to assess covariates of multimorbidity. The statistical significant level was fixed at p <0 .05. RESULTS:Prevalence of multimorbidity in the sampled population was estimated at 5.4%. Multivariate results indicate that the odds of multimobridty were significantly high among women (AOR = 3.34, 95% C.I. = 1.22-21.3) than men. On the other hand, the odds of multimorbidity were significantly low among young people aged below 24 years (AOR = 0.01, 95% C.I. = 0.00-0.07), currently married people (AOR = 0.24, 95% C.I. = 0.07-0.80) and individuals in the 2nd wealth quintile (AOR = 0.20, 95% C.I. = 0.05-0.75) compared to their counterparts. For behavioural risk factors, alcohol consumption (AOR = 4.80, 95% C.I. = 1.16-19.8) and overweight/obesity (AOR = 1.44, 95% CI = 1.12-2.61) were significantly associated with high multimorbidity prevalence. CONCLUSION:Multimorbidity was found to be more prevalent among women, alcohol consumers and overweight/obese people. There is need to strengthen interventions encouraging healthy lifestyles such as non-consumption of alcohol, physical activity and healthy diets. Moreover, there is need for a holistic approach of health care services to meet the needs of those suffering from multimorbidity.

Dataset Information

Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: cross-sectional study.

Publications

Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: cross-sectional study.

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