Cancer incidence and diagnostic characteristics in people with intellectual disabilities in the Netherlands: a national registry-based cohort study

Objective People with intellectual disabilities (ID) face notable health disparities, also affecting cancer care. This study is among the first to use nationwide population and cancer registry databases to compare cancer incidence in the population with ID and the general population.Methods and anal...

Full description

Saved in:
Bibliographic Details
Main Authors: Jenneken Naaldenberg, Haiko Bloemendal, Maarten Cuypers, Amina Banda, Lynette Oost, Geraline Leusink
Format: Article
Language:English
Published: BMJ Publishing Group 2025-06-01
Series:BMJ Oncology
Online Access:https://bmjoncology.bmj.com/content/4/1/e000686.full
Tags: Add Tag
No Tags, Be the first to tag this record!
_version_ 1850114208154255360
author Jenneken Naaldenberg
Haiko Bloemendal
Maarten Cuypers
Amina Banda
Lynette Oost
Geraline Leusink
author_facet Jenneken Naaldenberg
Haiko Bloemendal
Maarten Cuypers
Amina Banda
Lynette Oost
Geraline Leusink
author_sort Jenneken Naaldenberg
collection DOAJ
description Objective People with intellectual disabilities (ID) face notable health disparities, also affecting cancer care. This study is among the first to use nationwide population and cancer registry databases to compare cancer incidence in the population with ID and the general population.Methods and analysis A population-based cohort study enrolled all Dutch adults (18+) with indicators of ID (N=187 149) and a 1:4 random general population sample without ID (N=760 907). All cancer diagnoses from 1 January 2015 until 31 December 2020 were collected from the national cancer registry to compare incidence and diagnostic details.Results Overall, fewer incident cancer cases were found among individuals with ID than without ID (51.0 vs 104.1/10 000 person-years; adjusted OR (adj.OR) 0.79 (0.76–0.81)), with cases occurring at younger ages and being diagnosed more often at a more advanced stage than in the general population. Key distinctions from the general population include reduced odds of skin cancer (adj.OR 0.39 (0.36–0.43)) and elevated odds of cancer of unknown primary (OR 1.60 (1.29–1.98)). The fewest cancer diagnoses occurred among those entitled to long-term ID care (adj.OR 0.63 (0.60–0.66)), with those living independently being at greater risk for cancers of digestive, respiratory and female genital organs.Conclusion Although the overall incidence of cancer in the population with ID appears lower than in the general population, significant variations exist across ID subgroups and cancer types. These differences indicate varying exposures, lower cancer awareness and barriers to healthcare for individuals with ID. Addressing these differences requires customised strategies for public health, long-term care and oncology care.
format Article
id doaj-art-40f0351e49ba4e08b75278ad391d62ea
institution OA Journals
issn 2752-7948
language English
publishDate 2025-06-01
publisher BMJ Publishing Group
record_format Article
series BMJ Oncology
spelling doaj-art-40f0351e49ba4e08b75278ad391d62ea2025-08-20T02:36:58ZengBMJ Publishing GroupBMJ Oncology2752-79482025-06-014110.1136/bmjonc-2024-000686Cancer incidence and diagnostic characteristics in people with intellectual disabilities in the Netherlands: a national registry-based cohort studyJenneken Naaldenberg0Haiko Bloemendal1Maarten Cuypers2Amina Banda3Lynette Oost4Geraline Leusink5Primary and Community care, Radboud university medical center, Radboud Institute for Health Sciences, Nijmegen, Gelderland, NetherlandsDepartment of Medical Oncology, Radboudumc, Nijmegen, The NetherlandsDepartment of Primary and Community Care, Radboud University Medical Center, Nijmegen, NetherlandsDepartment of Primary and Community Care, Radboudumc, Nijmegen, The NetherlandsDepartment of Primary and Community Care, Radboudumc, Nijmegen, The NetherlandsDepartment of Primary and Community Care, Radboudumc, Nijmegen, The NetherlandsObjective People with intellectual disabilities (ID) face notable health disparities, also affecting cancer care. This study is among the first to use nationwide population and cancer registry databases to compare cancer incidence in the population with ID and the general population.Methods and analysis A population-based cohort study enrolled all Dutch adults (18+) with indicators of ID (N=187 149) and a 1:4 random general population sample without ID (N=760 907). All cancer diagnoses from 1 January 2015 until 31 December 2020 were collected from the national cancer registry to compare incidence and diagnostic details.Results Overall, fewer incident cancer cases were found among individuals with ID than without ID (51.0 vs 104.1/10 000 person-years; adjusted OR (adj.OR) 0.79 (0.76–0.81)), with cases occurring at younger ages and being diagnosed more often at a more advanced stage than in the general population. Key distinctions from the general population include reduced odds of skin cancer (adj.OR 0.39 (0.36–0.43)) and elevated odds of cancer of unknown primary (OR 1.60 (1.29–1.98)). The fewest cancer diagnoses occurred among those entitled to long-term ID care (adj.OR 0.63 (0.60–0.66)), with those living independently being at greater risk for cancers of digestive, respiratory and female genital organs.Conclusion Although the overall incidence of cancer in the population with ID appears lower than in the general population, significant variations exist across ID subgroups and cancer types. These differences indicate varying exposures, lower cancer awareness and barriers to healthcare for individuals with ID. Addressing these differences requires customised strategies for public health, long-term care and oncology care.https://bmjoncology.bmj.com/content/4/1/e000686.full
spellingShingle Jenneken Naaldenberg
Haiko Bloemendal
Maarten Cuypers
Amina Banda
Lynette Oost
Geraline Leusink
Cancer incidence and diagnostic characteristics in people with intellectual disabilities in the Netherlands: a national registry-based cohort study
BMJ Oncology
title Cancer incidence and diagnostic characteristics in people with intellectual disabilities in the Netherlands: a national registry-based cohort study
title_full Cancer incidence and diagnostic characteristics in people with intellectual disabilities in the Netherlands: a national registry-based cohort study
title_fullStr Cancer incidence and diagnostic characteristics in people with intellectual disabilities in the Netherlands: a national registry-based cohort study
title_full_unstemmed Cancer incidence and diagnostic characteristics in people with intellectual disabilities in the Netherlands: a national registry-based cohort study
title_short Cancer incidence and diagnostic characteristics in people with intellectual disabilities in the Netherlands: a national registry-based cohort study
title_sort cancer incidence and diagnostic characteristics in people with intellectual disabilities in the netherlands a national registry based cohort study
url https://bmjoncology.bmj.com/content/4/1/e000686.full
work_keys_str_mv AT jennekennaaldenberg cancerincidenceanddiagnosticcharacteristicsinpeoplewithintellectualdisabilitiesinthenetherlandsanationalregistrybasedcohortstudy
AT haikobloemendal cancerincidenceanddiagnosticcharacteristicsinpeoplewithintellectualdisabilitiesinthenetherlandsanationalregistrybasedcohortstudy
AT maartencuypers cancerincidenceanddiagnosticcharacteristicsinpeoplewithintellectualdisabilitiesinthenetherlandsanationalregistrybasedcohortstudy
AT aminabanda cancerincidenceanddiagnosticcharacteristicsinpeoplewithintellectualdisabilitiesinthenetherlandsanationalregistrybasedcohortstudy
AT lynetteoost cancerincidenceanddiagnosticcharacteristicsinpeoplewithintellectualdisabilitiesinthenetherlandsanationalregistrybasedcohortstudy
AT geralineleusink cancerincidenceanddiagnosticcharacteristicsinpeoplewithintellectualdisabilitiesinthenetherlandsanationalregistrybasedcohortstudy