Cause‐specific mortality and death certificate reporting in adults with moderate to profound intellectual disability

Tyrer, Freya; McGrother, Cath

doi:10.1111/j.1365-2788.2009.01201.x

Cited by 92 publications

(111 citation statements)

References 12 publications

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“…Although some studies have found an increase in prevalence of CVD 83 or CVD mortality 279 in individuals with ID, other studies report no difference or reduced risk compared with the general population (see Chapter 2, Results). Lower CVD mortality than in the general population could partially be explained through competing risks, given that individuals with ID have higher mortality from other causes, particularly respiratory illnesses, congenital abnormalities, neurological disorders and accidental injury.…”

Section: Economic Analysismentioning

confidence: 99%

“…There is good evidence from various sources that the rate of all-cause mortality is higher in individuals with ID, 63,279,282 particularly due to excess deaths from respiratory disorders, neurological diseases, congenital abnormalities and accidents. Standardised mortality ratios (SMRs) of 2.28 (95% CI 2.02 to 2.56) for men with ID and 3.24 (95% CI 2.83 to 3.69) for women with ID, compared with the general population, reported in a 14-year study of individuals from the Leicester area 279 were applied to the other-cause mortality rates that were derived from the ONS data.…”

Section: Cancer Mortalitymentioning

confidence: 99%

“…There is some evidence for an increased risk of CVD mortality in individuals with ID, 279 but other studies report no difference or even reduced risk compared with the general population (see results of meta-analysis presented in Chapter 2). It is also unclear whether these differences in mortality risk are due to differences in risk factors included in the QRISK or due to other factors.…”

Section: Cardiovascular Mortalitymentioning

confidence: 99%

“…This is supported by several studies looking at mortality rates from various causes in populations with ID. 279,280 Other-cause mortality…”

Section: Cancer Mortalitymentioning

confidence: 99%

“…Standardised mortality ratios (SMRs) of 2.28 (95% CI 2.02 to 2.56) for men with ID and 3.24 (95% CI 2.83 to 3.69) for women with ID, compared with the general population, reported in a 14-year study of individuals from the Leicester area 279 were applied to the other-cause mortality rates that were derived from the ONS data. The SMRs were not adjusted upwards to take into account the minimal increase and decrease in cancer and CVD mortality, respectively, in populations with ID, as it was unclear how large this adjustment should be and it was expected to make little difference to the outcomes.…”

Section: Cancer Mortalitymentioning

confidence: 99%

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Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

Dunkley

Tyrer

Spong

et al. 2017

Programme Grants Appl Res

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BackgroundThe prevalence of type 2 diabetes mellitus (T2DM) and of cardiovascular disease (CVD) is believed to be higher among people with intellectual disability (ID) than in the general population. However, research on prevalence and prevention in this population is limited.ObjectivesThe objectives of this programme of work were to establish a programme of research that would significantly enhance the knowledge and understanding of impaired glucose regulation (IGR) and T2DM in people with ID; to test strategies for the early identification of IGR and T2DM in people with ID; and to develop a lifestyle education programme and educator training protocol to promote behaviour change in a population with ID and IGR (or at a high risk of T2DM/CVD).SettingLeicestershire, UK.ParticipantsAdults with ID were recruited from community settings, including residential homes and family homes. Adults with mild to moderate ID who had an elevated body mass index (BMI) of ≥ 25 kg/m2and/or IGR were invited to take part in the education programme.Main outcome measuresThe primary outcome of the screening programme was the prevalence of screen-detected T2DM and IGR. The uptake, feasibility and acceptability of the intervention were assessed.Data sourcesParticipants were recruited from general practices, specialist ID services and clinics, and through direct contact.ResultsA total of 930 people with ID were recruited to the screening programme: 58% were male, 80% were white and 68% were overweight or obese. The mean age of participants was 43.3 years (standard deviation 14.2 years). Bloods were obtained for 675 participants (73%). The prevalence of previously undiagnosed T2DM was 1.3% [95% confidence interval (CI) 0.5% to 2%] and of IGR was 5% (95% CI 4% to 7%). Abnormal IGR was more common in those of non-white ethnicity; those with a first-degree family history of diabetes; those with increasing weight, waist circumference, BMI, diastolic blood pressure or triglycerides; and those with lower high-density lipoprotein cholesterol. We developed a lifestyle educational programme for people with ID, informed by findings from qualitative stakeholder interviews (health-care professionals,n = 14; people with ID,n = 7) and evidence reviews. Subsequently, 11 people with ID (and carers) participated in pilot education sessions (two groups) and five people attended education for the feasibility stage (one group). We found that it was feasible to collect primary outcome measures on physical activity and sedentary behaviour using wrist-worn accelerometers. We found that the programme was relatively costly, meaning that large changes in activity or diet (or a reduction in programme costs) would be necessary for the programme to be cost-effective. We also developed a quality development process for assessing intervention fidelity.LimitationsWe were able to screen only around 30% of the population and involved only a small number in the piloting and feasibility work.ConclusionsThe results from this programme of work have significantly enhanced the existing knowledge and understanding of T2DM and IGR in people with ID. We have developed a lifestyle education programme and educator training protocol to promote behaviour change in this population.Future workFurther work is needed to evaluate the STOP Diabetes intervention to identify cost-effective strategies for its implementation.Trial registrationClinicalTrials.gov NCT02513277.FundingThe National Institute for Health Research Programme Grants for Applied Research programme and will be published in full inHealth Research Programme Grants for Applied Research; Vol. 5, No. 11. See the NIHR Journals Library website for further project information.

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Section: Economic Analysismentioning

confidence: 99%

Section: Cancer Mortalitymentioning

confidence: 99%

Section: Cardiovascular Mortalitymentioning

confidence: 99%

“…This is supported by several studies looking at mortality rates from various causes in populations with ID. 279,280 Other-cause mortality…”

Section: Cancer Mortalitymentioning

confidence: 99%

Section: Cancer Mortalitymentioning

confidence: 99%

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Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

Dunkley

Tyrer

Spong

et al. 2017

Programme Grants Appl Res

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Life Expectancy: A Primer with a Focus on Neurological and Psychiatric Conditions

Katz¹,

Katz

2017

AMA Guides® Newsletter

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In the interface between medicine and law, physicians may be asked to comment on a patient's life expectancy. Life expectancy is based on life tables, eg, from the US census, and are published in National Vital Statistics reports. The life expectancy for a particular patient with a serious medical illness or disability cannot be determined from such tables; rather one must investigate the life expectancies associated with the patient's particular disease or condition. Standardized mortality ratios have a complex relationship to life expectancy, depending on the patient's age and specific conditions. For example, excellent data are available regarding life expectancy for individuals with spinal cord injury (SCI) and are sorted in various ways, eg conditional life expectancy calculated for persons who have survived the first year after an SCI. Major depressive disorder is associated with increased mortality due to suicidality and other causes (eg, cardiovascular disease or respiratory disease); men with mental disorders live twenty years less and women live fifteen years less compared with the general population. To testify about life expectancy in a person with neurological or psychiatric disability, the experience of a personal physician is not adequate—familiarity with epidemiological data is a prerequisite. This article is based on a wide and recent body of literature concerning life expectancy and gives an indication of some of the complexities regarding life expectancy.

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Association of Psychiatric Comorbidity With the Risk of Premature Death Among Children and Adults With Attention-Deficit/Hyperactivity Disorder

et al. 2019

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IMPORTANCE A previous register-based study reported elevated all-cause mortality in attention-deficit/hyperactivity disorder (ADHD), but cause-specific risks and the potential associations of psychiatric comorbidities remain unknown.OBJECTIVES To investigate the all-cause and cause-specific mortality risks in ADHD and to explore the potential role of psychiatric comorbidities. DESIGN, SETTING, AND PARTICIPANTSThis prospective cohort study used Swedish national registers to identify 2 675 615 individuals born in Sweden from January 1, 1983, through December 31, 2009, as the study population, among whom 86 670 individuals (3.2%) received a diagnosis of ADHD during follow-up. Follow-up was completed December 31, 2013, and data were analyzed from October 2018 through March 2019.EXPOSURES Attention-deficit/hyperactivity disorder identified by first clinical diagnosis or first prescription of ADHD medications as recorded in Swedish registers. Clinical diagnosis of psychiatric comorbidity was available in the National Patient Register. MAIN OUTCOMES AND MEASURESAll-cause and cause-specific mortalities and hazard ratios (HRs) using Cox proportional hazards regression models. RESULTSIn the overall cohort of 2 675 615 individuals, 1 374 790 (51.4%) were male (57 919 with an ADHD diagnosis) and 1 300 825 (48.6%) were female (28 751 with an ADHD diagnosis). Mean (SD) age at study entry was 6.4 (5.6) years. During follow-up, 424 individuals with ADHD and 6231 without ADHD died, resulting in mortality rates of 11.57 and 2.16 per 10 000 person-years, respectively. The association was stronger in adulthood (HR, 4.64; 95% CI, 4.11-5.25) compared with childhood (HR, 1.41; 95% CI, 0.97-2.04) and increased substantially with the number of psychiatric comorbidities with ADHD (HR for individuals with only ADHD, 1.41 [95% CI, 1.01-1.97]; HR for those with Ն4 comorbidities, 25.22 [95% CI,). In adulthood, when adjusting for early-onset psychiatric comorbidity, the association between ADHD and risk of death due to natural causes was attenuated substantially and was no longer statistically significant (HR, 1.32; 95% CI, 0.94-1.85). When adjusting for later-onset psychiatric disorders, the association was attenuated to statistical nonsignificance for death due to suicide (HR, 1.13; 95% CI, 0.88-1.45) but remained statistically significant for death caused by unintentional injury (HR, 2.14; 95% CI, 1.71-2.68) or other external causes (HR, 1.75; 95% CI, 1.23-2.48).CONCLUSIONS AND RELEVANCE Psychiatric comorbidity appears to play an important role in all-cause and cause-specific mortality risks in ADHD. In adulthood, early-onset psychiatric comorbidity contributed primarily to the association with death due to natural causes, whereas later-onset psychiatric comorbidity mainly influenced death due to unnatural causes, including suicide and unintentional injury. These findings suggest that health care professionals should closely monitor specific psychiatric comorbidities in individuals with ADHD to identify high-risk groups for prevention effor...

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Cause‐specific mortality and death certificate reporting in adults with moderate to profound intellectual disability

Cited by 92 publications

References 12 publications

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

Life Expectancy: A Primer with a Focus on Neurological and Psychiatric Conditions

Association of Psychiatric Comorbidity With the Risk of Premature Death Among Children and Adults With Attention-Deficit/Hyperactivity Disorder

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