Clinical Predictors of Mortality in Adults with Intellectual Disabilities with and without Down Syndrome

Background.Mood, baseline functioning, and cognitive abilities as well as psychotropic medications may contribute to mortality in adults with and without Down Syndrome (DS).Methods.Population-based (nonclinical), community-dwelling adults with intellectual disabilities (IDs) were recruited between 1995 and 2000, assessed individually for 1–4 times, and then followed by yearly phone calls.Results.360 participants (116 with DS and 244 without DS) were followed for an average of 12.9 years (range 0–16.1 years as of July 2011). 108 people died during the course of the followup, 65 males (31.9% of all male participants) and 43 females (27.6% of all female participants). Cox proportional hazards modeling showed that baseline practical skills, seizures, anticonvulsant use, depressive symptoms, and cognitive decline over the first six years all significantly contributed to mortality, as did a diagnosis of DS, male gender, and higher age at study entry. Analysis stratified by DS showed interesting differences in mortality predictors.Conclusion.Although adults with DS have had considerable improvements in life expectancy over time, they are still disadvantaged compared to adults with ID without DS. Recognition of potentially modifiable factors such as depression may decrease this risk.

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Abstract 16476: Visit-to-Visit Blood Pressure Variability is Associated With Incident Frailty: The Multidomain Alzheimer Preventive Trial (MAPT)

Circulation ◽

10.1161/circ.142.suppl_3.16476 ◽

2020 ◽

Vol 142 (Suppl_3) ◽

Author(s):

Laure Rouch ◽

Philipe de Souto Barreto ◽

Olivier Hanon ◽

Jacques Amar ◽

Yves Rolland ◽

...

Keyword(s):

Blood Pressure ◽

Standard Deviation ◽

Blood Pressure Variability ◽

Proportional Hazards ◽

Antihypertensive Drugs ◽

Cox Proportional Hazards ◽

Community Dwelling ◽

Clinical Predictors ◽

Increased Risk ◽

Preventive Trial

Introduction: Visit-to-visit blood pressure variability (BPV) has been associated with greater cardiovascular and all-cause mortality, cognitive impairment, and incident dementia. It may also represent a decline in homeostatic mechanisms in blood pressure (BP) regulation associated with frailty, one of the most problematic expression of population aging. Hypothesis: We hypothesized that visit-to-visit systolic (SBPV), diastolic (DBPV), mean arterial (MAPV) and pulse pressure (PPV) variability are associated with greater incident frailty. Methods: We included 1,394 non-frail community-dwelling participants aged ≥ 70 years from the Multidomain Alzheimer Preventive Trial (MAPT) who underwent repeated clinical examinations over a 5-year follow-up period. SBPV, DBPV, MAPV and PPV were evaluated using standard deviation, coefficient of variation (CV), average real variability, successive variation, variation independent of mean and residual standard deviation. Incident frailty was assessed using the Fried phenotype. Cox proportional hazards models were used for the analyses. Results: Higher SBPV was significantly associated with increased risk of incident frailty (1-sd increase of CV: HR = 1.18, 95% CI [1.02-1.37], p=0.03) after adjustment for demographics, body mass index, stroke, ischemic heart disease, diabetes, heart failure, antihypertensive drugs, systolic BP, MAPT intervention groups and baseline pre-frail status. Similar results were observed with all indicators of variability. DBPV and MAPV were not associated with incident frailty (p=0.6 and p=0.2, respectively). Interestingly, higher PPV was also associated with a greater risk of developing frailty over time (1-sd increase of CV: HR = 1.17, 95% CI [1.01-1.35], p=0.03). Conclusion: Independently of BP, higher SBPV and PPV are major clinical predictors of incident frailty. Our findings support the concept of BP physiological dysregulation underlying the frail state and suggest that controlling BP instability could be a promising interventional target in preventing frailty.

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Rates, causes, place and predictors of mortality in adults with intellectual disabilities with and without Down syndrome: cohort study with record linkage

BMJ Open ◽

10.1136/bmjopen-2019-036465 ◽

2020 ◽

Vol 10 (5) ◽

pp. e036465 ◽

Cited By ~ 1

Author(s):

Sally-Ann Cooper ◽

Linda Allan ◽

Nicola Greenlaw ◽

Paula McSkimming ◽

Adam Jasilek ◽

...

Keyword(s):

Down Syndrome ◽

Cohort Study ◽

Intellectual Disabilities ◽

Mortality Risk ◽

Record Linkage ◽

Causes Of Death ◽

Percutaneous Endoscopic Gastrostomy Tube ◽

Clinical Predictors ◽

Endoscopic Gastrostomy ◽

Adults With Intellectual Disabilities

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.

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Anhedonia as a Potential Risk Factor of Alzheimer’s Disease in a Community-Dwelling Elderly Sample: Results from the ZARADEMP Project

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18041370 ◽

2021 ◽

Vol 18 (4) ◽

pp. 1370

Author(s):

David Vaquero-Puyuelo ◽

Concepción De-la-Cámara ◽

Beatriz Olaya ◽

Patricia Gracia-García ◽

Antonio Lobo ◽

...

Keyword(s):

Alzheimer’S Disease ◽

Alzheimer's Disease ◽

Potential Risk ◽

Proportional Hazards ◽

Univariate Analysis ◽

Population Sample ◽

Public Health Problem ◽

Cox Proportional Hazards ◽

Community Dwelling ◽

Major Public Health Problem

(1) Introduction: Dementia is a major public health problem, and Alzheimer’s disease (AD) is the most frequent subtype. Clarifying the potential risk factors is necessary in order to improve dementia-prevention strategies and quality of life. Here, our purpose was to investigate the role of the absence of hedonic tone; anhedonia, understood as the reduction on previous enjoyable daily activities, which occasionally is underdetected and underdiagnosed; and the risk of developing AD in a cognitively unimpaired and non-depressed population sample. (2) Method: We used data from the Zaragoza Dementia and Depression (ZARADEMP) project, a longitudinal epidemiological study on dementia and depression. After excluding subjects with dementia, a sample of 2830 dwellers aged ≥65 years was followed for 4.5 years. The geriatric mental state examination was used to identify cases of anhedonia. AD was diagnosed by a panel of research psychiatrists according to Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) criteria. A multivariate survival analysis and Cox proportional hazards regression model were performed, and the analysis was controlled by an analysis for the presence of clinically significant depression. (3) Results: We found a significant association between anhedonia cases and AD risk in the univariate analysis (hazard ratio (HR): 2.37; 95% CI: 1.04–5.40). This association persisted more strongly in the fully adjusted model. (4) Conclusions: Identifying cognitively intact individuals with anhedonia is a priority to implement preventive strategies that could delay the progression of cognitive and functional impairment in subjects at risk of AD.

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The Joint Effects of Loneliness and Depression on Mortality: Does Gender Matter?

Innovation in Aging ◽

10.1093/geroni/igaa057.1034 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 323-323

Author(s):

Ted Kheng Siang Ng ◽

Abhijit Visaria ◽

Angelique W M Chan ◽

Kheng Siang Ted Ng

Keyword(s):

Los Angeles ◽

Mortality Risk ◽

Proportional Hazards ◽

Depression Scale ◽

Well Being ◽

Joint Effect ◽

Epidemiologic Studies ◽

Cox Proportional Hazards ◽

Community Dwelling ◽

Increased Risk

Abstract Loneliness and depression are both associated with an increased risk of all-cause mortality among older adults. However, the evidence on the joint effect of loneliness and depression is scarce. Furthermore, previous research has rarely examined the modifying effects of gender. We investigated these questions using the Panel on Health and Aging of Singaporean Elderly, a nationally-representative cohort study of community-dwelling older Singaporean adults aged 60 and above, conducted in 2009 with two follow-up waves in 2011 and 2015 (N=4536). We operationalized six groups based on three categories of loneliness measured using the 3-item University of California, Los Angeles (UCLA) loneliness scale: always lonely, sometimes lonely, and never lonely; Two categories of depressive symptom scores were measured using the 11-item Center for Epidemiologic Studies Depression Scale (CES-D) scale: depressed and not depressed. Cox proportional hazards models were employed to estimate the mortality risks for each group, with an extensive set of covariates. Due to significant differences in the prevalence of loneliness and depression in different genders, we conducted gender-stratified analyses. Compared to being not depressed and never lonely, women who were depressed and sometimes lonely and who were not depressed but always lonely had a higher mortality risk. Men who were not depressed but sometimes lonely had a higher mortality risk. We conclude that loneliness appears to be the predominant construct in conferring excess mortality risk. Health policies and interventions addressing the factors common and unique to each gender may improve psychological well-being at older ages, thereby extending the lifespan.

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Exploring the Outcomes and Experiences of Black and White Athletes Following a Sport-Related Concussion: A Retrospective Cohort Study

Neurology ◽

10.1212/01.wnl.0000801756.53005.b1 ◽

2021 ◽

Vol 98 (1 Supplement 1) ◽

pp. S3.1-S3

Author(s):

Viviana Jimenez ◽

Aaron Yengo-Kahn ◽

Jessica Wallace ◽

Douglas Totten ◽

Christopher Bonfield ◽

...

Keyword(s):

Proportional Hazards ◽

Cox Proportional Hazards ◽

Return To School ◽

Black Athletes ◽

Symptom Resolution ◽

Phone Calls ◽

Sport Concussion ◽

Television Time ◽

Psychiatric Conditions ◽

Specific Activities

ObjectiveYoung American athletes, at risk of sport-related concussion (SRC), represent many races, however, it is unknown how race influences the experience and outcome of SRC. Our objective was to compare White and Black athletes' recovery and subjective experiences after SRC.BackgroundNA.Design/MethodsA retrospective study was performed using the Vanderbilt Sport Concussion registry. Self-reported White (n = 211) and Black (n = 36) athletes (ages 12–23) treated for SRC between 2012 and 15 were included. Athletes with learning disabilities or psychiatric conditions were excluded. Data was collected by EMR review and phone calls to athletes and parents/guardians. The primary outcomes were: (1) days to symptom resolution (SR), (2) days to return-to-school, (3) changes in any daily activity (binary), (4) and sport behavior (binary). Secondary outcomes were changes in specific activities such as sleep, schoolwork, television time, as well as equipment (binary), playing style (more reckless, unchanged, less reckless) and whether the athlete retired from sport. Descriptive analyses, multivariable Cox proportional hazards and logistic regression were performed.ResultsA retrospective study was performed using the Vanderbilt Sport Concussion registry. Self-reported White (n = 211) and Black (n = 36) athletes (ages 12–23) treated for SRC between 2012 and 15 were included. Athletes with learning disabilities or psychiatric conditions were excluded. Data was collected by EMR review and phone calls to athletes and parents/guardians. The primary outcomes were: (1) days to symptom resolution (SR), (2) days to return-to-school, (3) changes in any daily activity (binary), (4) and sport behavior (binary). Secondary outcomes were changes in specific activities such as sleep, schoolwork, television time, as well as equipment (binary), playing style (more reckless, unchanged, less reckless) and whether the athlete retired from sport. Descriptive analyses, multivariable Cox proportional hazards and logistic regression were performed.ConclusionsRacial differences appear to exist in the outcomes and experience of SRC for young athletes, as Black athletes reached symptom resolution and return-to-school sooner than White athletes. Race should be considered as an important social determinant in SRC treatment.

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Abstract P316: Prehypertension and Incident Acute Coronary Heart Disease in the REasons for Geographic and Racial Differences in Stroke (REGARDS) Study

Circulation ◽

10.1161/circ.127.suppl_12.ap316 ◽

2013 ◽

Vol 127 (suppl_12) ◽

Author(s):

Stephen P Glasser ◽

Yulia Khodneva ◽

Daniel Lackland ◽

Ronald Prineas ◽

Monika Safford

Keyword(s):

Coronary Heart Disease ◽

Heart Disease ◽

Racial Differences ◽

Proportional Hazards ◽

Cox Proportional Hazards ◽

Community Dwelling ◽

Cox Proportional Hazards Models ◽

Chd Risk ◽

Regards Study ◽

Chd Risk Factors

Objective: The independent prognostic value of prehypertension (preHTN) for incident coronary heart disease (CHD) remains unsettled. Using the REasons for Geographic And Racial Differences in Stroke (REGARDS) cohort study, we examined associations between preHTN and incident acute CHD and CVD death. Methods: REGARDS includes 30,239 black and white community-dwelling adults age 45 and older at baseline. Recruitment occurred from 2003-7, with baseline interviews and in-home data collection for physiologic measures. Follow-up is conducted by telephone every 6 months to detect events and deaths, which are adjudicated by experts. Systolic BP was categorized into <120 mmHg (n=4385), 120-129 mmHg (n=4000), 130-139 (n=2066), and hypertension was categorized into controlled (<140/90 mmHg on treatment) (n=8378), and uncontrolled (>140/90 mmHg) (n=5364). Incident acute CHD was defined as definite or probable myocardial infarction (MI) or acute CHD death. CVD death was defined as acute CHD, stroke, heart failure or other cardiovascular disease related. Cox proportional hazards models estimated the hazard ratios (HR) for incident CHD by BP categories, adjusting for sociodemographics and CHD risk factors. Results: The 23,393 participants free of CHD at baseline were followed for a median of 4.4 years. Mean age was 64.1, 58% were women and 42% were black. There was a significant interaction between sex and BP categories, therefore analyses were stratified by sex. There were 252 non-fatal and fatal acute CHD events among women and 407 among men. Among women, compared with SBP<120 mmHg, BP categories above SBP 120 mmHg were associated with incident CHD (adjusted HR for SBP120-129 mmHg=1.94 {95% CI 1.04-3.62]; SBP 130-139 mmHg=1.92 {0.95-3.87}; controlled HTN=2.16 {1.25-3.75}; uncontrolled HTN=3.25 {1.87-5.65}) in fully adjusted models. Among men, only uncontrolled HTN was associated with incident CHD (HR=1.55 {1.11-2.17}). Conclusion: In this sample, preHTN may be associated with incident CHD among women but not men.

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Diet Inflammatory Index and Dementia Incidence: A Population-Based Study

Neurology ◽

10.1212/wnl.0000000000012973 ◽

2021 ◽

pp. 10.1212/WNL.0000000000012973

Author(s):

Sokratis Charisis ◽

Eva Ntanasi ◽

Mary Yannakoulia ◽

Costas A Anastasiou ◽

Mary H Kosmidis ◽

...

Keyword(s):

Proportional Hazards ◽

Population Based ◽

Cox Proportional Hazards ◽

Community Dwelling ◽

Dietary Interventions ◽

Clinical Criteria ◽

Inflammatory Index ◽

Incident Dementia ◽

Dementia Incidence ◽

Increased Risk

Background and objectives:Aging is characterized by a functional shift of the immune system towards a proinflammatory phenotype. This derangement has been associated with cognitive decline and has been implicated in the pathogenesis of dementia. Diet can modulate systemic inflammation; thus, it may be a valuable tool to counteract the associated risks for cognitive impairment and dementia. The present study aimed to explore the associations between the inflammatory potential of diet, assessed using an easily applicable, population-based, biomarker-validated diet inflammatory index (DII), and the risk for dementia in community-dwelling older adults.Methods:Individuals from the Hellenic Longitudinal Investigation of Aging and Diet (HELIAD) were included in the present cohort study. Participants were recruited through random population sampling, and were followed for a mean of 3.05 (SD=0.85) years. Dementia diagnosis was based on standard clinical criteria. Those with baseline dementia and/or missing cognitive follow-up data were excluded from the analyses. The inflammatory potential of diet was assessed through a DII score which considers literature-derived associations of 45 food parameters with levels of pro- and anti-inflammatory cytokines in the blood; higher values indicated a more pro-inflammatory diet. Consumption frequencies were derived from a detailed food frequency questionnaire, and were standardized to representative dietary intake normative data from 11 different countries. Analysis of dementia incidence as a function of baseline DII scores was performed by Cox proportional hazards models.Results:Analyses included 1059 individuals (mean age=73.1 years; 40.3% males; mean education=8.2 years), 62 of whom developed incident dementia. Each additional unit of DII was associated with a 21% increase in the risk for dementia incidence [HR=1.21 (1.03 – 1.42); p=0.023]. Compared to participants in the lowest DII tertile, participants in the highest one (maximal pro-inflammatory diet potential) were 3 [(1.2 – 7.3); p=0.014] times more likely to develop incident dementia. The test for trend was also significant, indicating a potential dose-response relationship (p=0.014).Conclusions:In the present study, higher DII scores (indicating greater pro-inflammatory diet potential) were associated with an increased risk for incident dementia. These findings might avail the development of primary dementia preventive strategies through tailored and precise dietary interventions.

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Abstract P322: Myocardial Contraction Fraction is an Independent Predictor of Incident Adverse Cardiovascular Events; The Framingham Heart Study

Circulation ◽

10.1161/circ.129.suppl_1.p322 ◽

2014 ◽

Vol 129 (suppl_1) ◽

Author(s):

Michael L Chuang ◽

Philimon Gona ◽

Connie W Tsao ◽

Carol J Salton ◽

Warren J Manning ◽

...

Keyword(s):

Left Ventricle ◽

Stroke Volume ◽

Proportional Hazards ◽

Independent Predictor ◽

Myocardial Contraction ◽

Cox Proportional Hazards ◽

Community Dwelling ◽

Heart Study ◽

Myocardial Contraction Fraction

Introduction: Myocardial contraction fraction (MCF) is the ratio of left ventricular (LV) stroke volume to myocardial volume, and thus a measure of LV pumping capacity per unit of myocardium. We sought to determine whether MCF measured using current steady-state free precession (SSFP) cardiac magnetic resonance (CMR) sequences was an independent predictor of incident “hard” cardiovascular disease (CVD) events, defined by myocardial infarction (MI), stroke, unstable angina (UA), hospitalized heart failure (HF) or CVD death in a community dwelling cohort initially free of these CVD events. Methods: 1794 members of the Framingham Heart Study Offspring cohort (aged 65±9 years) underwent CMR between 2002-2006 using a 1.5-Tesla system with contiguous multislice SSFP cine imaging to encompass the left ventricle. MCF was determined from the cine images by a single observer blinded to participant characteristics. We tracked incident hard CVD events over median 6.5-year follow up and used Cox proportional hazards models (adjusted for age, sex, body mass index, systolic blood pressure, diabetes, dyslipidemia, smoking, treatment for hypertension) to determine hazard of hard CVD events per increment (0.10) of MCF. Results: MCF was determined in 1776 (99%) Offspring (835 men). Overall, MCF was greater in women (0.92±0.14 vs. 0.78±0.15 for men), p<0.0001. There were 60 incident hard CVD events during follow up. Incident hard events included 26 MI, 2 UA, 13 stroke, 14 hospitalized HF and 5 CVD deaths. Offspring experiencing an incident event had lower MCF (0.78±0.19 vs. 0.86±0.15 for those free of events), p=0.002. On MV-adjusted Cox proportional hazards analyses, a greater MCF was protective against hard CVD events, HR [95% confidence intervals] = 0.76 [0.63 - 0.93] per 0.10 increment of MCF. Conclusion: Over 6.5-year follow-up, greater MCF is protective against major adverse CVD events, even after adjustment for traditional CVD risk factors in a community dwelling cohort of middle-aged and older predominantly European-descended adults. Determination of MCF requires only knowledge of LV stroke volume and myocardial volume, both of which are routinely determined in a standard CMR examination of the left ventricle, and thus imposes no additional scan-time or analysis burden. While MCF may be clinically useful for prediction of risk for incident hard CVD events, its potential value in younger age groups and other ethnicities remains to be determined.

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Multimorbidity and Polypharmacy Are Independently Associated With Mortality in Older People With Intellectual Disabilities: A 5-Year Follow-Up From the HA-ID Study

American Journal on Intellectual and Developmental Disabilities ◽

10.1352/1944-7558-123.1.72 ◽

2018 ◽

Vol 123 (1) ◽

pp. 72-82 ◽

Cited By ~ 17

Author(s):

Josje D. Schoufour ◽

Alyt Oppewal ◽

Hanne J.K. van der Maarl ◽

Heidi Hermans ◽

Heleen M. Evenhuis ◽

...

Keyword(s):

Down Syndrome ◽

Older People ◽

Proportional Hazards ◽

Cox Proportional Hazards ◽

Survival Models ◽

Future Research ◽

Mortality Data ◽

Chronic Medication ◽

Wide Range

Abstract We studied the association between multimorbidity, polypharmacy, and mortality in 1,050 older adults (50+) with intellectual disability (ID). Multimorbidity (presence of ≥ 4 chronic health conditions) and polypharmacy (presence ≥ 5 chronic medication prescriptions) were collected at baseline. Multimorbidity included a wide range of disorders, including hearing impairment, thyroid dysfunction, autism, and cancer. Mortality data were collected during a 5-year follow-up period. Cox proportional hazards models were used to determine the independent association between multimorbidity and polypharmacy with survival. Models were adjusted for age, sex, level of ID, and the presence of Down syndrome. We observed that people classified as having multimorbidity or polypharmacy at baseline were 2.60 (95% CI = 1.86–3.66) and 2.32 (95% CI = 1.70–3.16) times more likely to decease during the follow-up period, respectively, independent of age, sex, level of ID, and the presence of Down syndrome. Although slightly attenuated, we found similar hazard ratios if the model for multimorbidity was adjusted for polypharmacy and vice versa. We showed for the first time that multimorbidity and polypharmacy are strong predictors for mortality in people with ID. Awareness and screening of these conditions is important to start existing treatments as soon as possible. Future research is required to develop interventions for older people with ID, aiming to reduce the incidence of polypharmacy and multimorbidity.

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Birth incidence, deaths and hospitalisations of children and young people with Down syndrome, 1990–2015: birth cohort study

BMJ Open ◽

10.1136/bmjopen-2019-033770 ◽

2020 ◽

Vol 10 (4) ◽

pp. e033770 ◽

Cited By ~ 1

Author(s):

Laura Anne Hughes-McCormack ◽

Ruth McGowan ◽

J P Pell ◽

Daniel Mackay ◽

Angela Henderson ◽

...

Keyword(s):

Down Syndrome ◽

Young People ◽

Live Birth ◽

Proportional Hazards ◽

Hospital Admissions ◽

Admission Rate ◽

Cox Proportional Hazards ◽

Birth Cohort Study ◽

Research Attention ◽

Children With Down Syndrome

ObjectiveTo investigate current Down syndrome live birth and death rates, and childhood hospitalisations, compared with peers.SettingGeneral community.ParticipantsAll live births with Down syndrome, 1990–2015, identified via Scottish regional cytogenetic laboratories, each age–sex–neighbourhood deprivation matched with five non-Down syndrome controls. Record linkage to Scotland’s hospital admissions and death data.Primary outcomeHRs comparing risk of first hospitalisation (any and emergency), readmission for children with Down syndrome and matched controls were calculated using stratified Cox proportional hazards (PH) model, and length of hospital stay was calculated using a conditional log-linear regression model.Results689/1479 (46.6%) female and 769/1479 (51.9%) male children/young people with Down syndrome were identified (1.0/1000 births, with no reduction over time); 1235 were matched. 92/1235 (7.4%) died during the period, 18.5 times more than controls. More of the Down syndrome group had at least one admission (incidence rate ratio(IRR) 72.89 (68.72–77.32) vs 40.51 (39.15–41.92); adjusted HR=1.84 (1.68, 2.01)) and readmissions (IRR 54.85 (51.46–58.46) vs 15.06 (14.36–15.80); adjusted HR=2.56 (2.08, 3.14)). More of their admissions were emergencies (IRR 56.78 (53.13–60.72) vs 28.88 (27.73–30.07); first emergency admission adjusted HR=2.87 (2.61, 3.15)). Children with Down syndrome had 28% longer first admission after birth. Admission rate increased from 1990–2003 to 2004–2014 for the Down syndrome group (from 90.7% to 92.2%) and decreased for controls (from 63.3% to 44.8%).ConclusionsWe provide contemporaneous statistics on the live birth rate of babies with Down syndrome, and their childhood death rate. They require more hospital admissions, readmissions emergency admissions and longer lengths of stays than their peers, which has received scant research attention in the past. This demonstrates the importance of statutory planning as well as informal support to families to avoid added problems in child development and family bonding over and above that brought by the intellectual disabilities associated with Down syndrome.

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