Linking national public services data to estimate the prevalence of intellectual disabilities in The Netherlands: results from an explorative population-based study

Cuypers, Maarten; Tobi, Hilde; Naaldenberg, Jenneken; Leusink, Geraline L

doi:10.1016/j.puhe.2021.04.002

Cited by 18 publications

(24 citation statements)

References 24 publications

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“…All recipients of ID‐related services through any of these systems were classified by the characteristics of their supportive needs because the actual ID diagnoses are not saved in these databases. 27 These data on ID‐related care needs are available from 2015 onward. Three ID subgroups were generated: 1) those receiving residential ID care (least independent), 2) those receiving nonresidential ID‐related chronic care (moderately independent), and 3) a group with mild ID consisting of those receiving social benefits rather than chronic care (fairly independent).…”

Section: Methodsmentioning

confidence: 99%

“…Three ID subgroups were generated: 1) those receiving residential ID care (least independent), 2) those receiving nonresidential ID‐related chronic care (moderately independent), and 3) a group with mild ID consisting of those receiving social benefits rather than chronic care (fairly independent). This method for identifying individuals with ID in population data has been described in more detail elsewhere 27 and has been applied to other studies related to health and ID before. 21 , 28 , 29 All individuals without ID characterization were analyzed as members of the general population.…”

Section: Methodsmentioning

confidence: 99%

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Cancer‐related mortality among people with intellectual disabilities: A nationwide population‐based cohort study

Cuypers¹,

Schalk²,

Boonman³

et al. 2021

Cancer

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BACKGROUND:Concerns have been raised about access to cancer screening and the timely receipt of cancer care for people with an intellectual disability (ID). However, knowledge about cancer mortality as a potential consequence of these disparities is still limited. This study, therefore, compared cancer-related mortality patterns between people with and without ID. METHODS: A historical cohort study (2015-2019) linked the Dutch adult population (approximately 12 million people with an ID prevalence of 1.45%) and mortality registries. Cancer-related mortality was identified by the underlying cause of death (according to the chapter on neoplasms in the International Classification of Diseases, Tenth Revision). Observed mortality and calculated age-and sex-standardized mortality ratios (SMRs) with 95% confidence intervals (CIs) were reported. RESULTS: There were 11,102 deaths in the ID population (21.7% cancer-related; n = 2408) and 730,405 deaths in the general population (31.2%; n = 228,120) available for analysis. Cancer was noted as the cause of death more often among people with ID in comparison with the general population (SMR, 1.48; 95% CI, 1.42-1.54), particularly in the young age groups. High-mortality cancers included cancers within the national screening program (SMRs,, digestive cancers (SMRs, 1.24-2.56), bladder cancer (SMR, 2.07; 95% CI, 1.61-2.54), and cancers of unknown primary (SMR, 2.48; 95% CI, 2.06-2.89). CONCLUSIONS: Cancer was reported as the cause of death approximately 1.5 times more often in people with ID compared with the general population. This mortality disparity may indicate adverse effects from inequalities in screening and cancer care experienced by people with ID.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Cancer‐related mortality among people with intellectual disabilities: A nationwide population‐based cohort study

Cuypers¹,

Schalk²,

Boonman³

et al. 2021

Cancer

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“…1 Approximately 1% of the global population complies to the formal definition of ID, but under-recognition and under-registration of ID could imply a higher percentage in general practice. 2 As people with ID may experience difficulties in understanding and communicating (symptoms of) diseases, it can be more challenging to diagnose and timely treat conditions, resulting in more avoidable hospitalizations and premature deaths as compared to people without ID. 3-5 Additionally, multimorbidity is highly prevalent, and frailty occurs 15 years earlier in people with ID.…”

Section: Introductionmentioning

confidence: 99%

“…However, a full understanding of this complexity in people with ID is hampered by incomplete and insufficient literature on several crucial aspects. The different age and sex distribution of people with ID compared with the general population, meaning their life expectancy is lower and males more often have ID than females, 2 , 5 should be considered when studying chronic disease patterns. 7 As current literature fails to do so, it is unclear whether the highest-impact chronic diseases, i.e.…”

Section: Introductionmentioning

confidence: 99%

Chronic diseases and comorbidities in adults with and without intellectual disabilities: comparative cross-sectional study in Dutch general practice

Schalk¹,

Bischoff²,

Cuypers³

2022

Family Practice

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Background Chronic disease and comorbidity patterns in people with intellectual disabilities (ID) are more complex than in the general population. However, incomplete understanding of these differences limits care providers in addressing them. Objective To compare chronic disease and comorbidity patterns in chronically ill patients with and without ID in Dutch general practice. Methods In this population-based study, a multi-regional primary care database of 2018 was combined with national population data to improve identification of adults with ID. Prevalence was calculated using Poisson regression to estimate prevalence ratios and 95% confidence intervals for the highest-impact chronic diseases (ischemic heart disease (IHD), cerebrovascular disease (CVD), diabetes mellitus (DM), and chronic obstructive pulmonary disease (COPD)) and comorbidities. Results Information from 18,114 people with ID and 1,093,995 people without ID was available. When considering age and sex, CVD (PR = 1.1), DM (PR = 1.6), and COPD (PR = 1.5) times more prevalent in people with than without ID. At younger age, people with ID more often had a chronic disease and multiple comorbidities. Males with ID most often had a chronic disease and multiple comorbidities. Comorbidities of circulatory nature were most common. Conclusions This study identified a younger onset of chronic illness and a higher prevalence of multiple comorbidities among people with ID in general practice than those without ID. This underlines the complexity of people with ID and chronic diseases in general practice. As this study confirmed the earlier onset of chronic diseases and comorbidities, it is recommended to acknowledge these age differences when following chronic disease guidelines.

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“…This population-based cohort study used a pre-existing cohort that included the entire Dutch adult population (aged ≥18 years) on Jan 1, 2015, and identified people with presumed intellectual disabilities through data linkage. 27 For all individuals within the cohort who died up to and including Dec 31, 2021, mortality data were obtained from the Dutch mortality register. Therefore, for each individual in the cohort, information was available about demographics (sex and date of birth), indicators of intellectual disability, if any, based on chronic care and (social) services use, and in case of death, the date and underlying cause of death.…”

Section: Methodsmentioning

confidence: 99%

All-cause and cause-specific mortality among people with and without intellectual disabilities during the COVID-19 pandemic in the Netherlands: a population-based cohort study

Cuypers¹,

Koks-Leensen²,

Schalk³

et al. 2023

The Lancet Public Health

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Linking national public services data to estimate the prevalence of intellectual disabilities in The Netherlands: results from an explorative population-based study

Cited by 18 publications

References 24 publications

Cancer‐related mortality among people with intellectual disabilities: A nationwide population‐based cohort study

Cancer‐related mortality among people with intellectual disabilities: A nationwide population‐based cohort study

Chronic diseases and comorbidities in adults with and without intellectual disabilities: comparative cross-sectional study in Dutch general practice

All-cause and cause-specific mortality among people with and without intellectual disabilities during the COVID-19 pandemic in the Netherlands: a population-based cohort study

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