Individuals with intellectual disability comprise a potential vulnerable group in the society. We have already showed that they have a markedly increased cancer-specific mortality and lower participation in breast cancer screening compared to the general population. This indicates a need for increased focus on cancer in this group.
Purpose
The aim is to provide a knowledge base on potential inequality in cancer among individuals with intellectual disability that can inform future targeted initiatives and strategies to prevent cancer and optimize cancer care and treatment in this vulnerable group.
Specifically, we wil focus on:
- Cancer incidence in general and stage-specific incidence
- Routes to cancer diagnosis (screening, cancer patient pathways, planned or unplanned hospital admission)
- Participation in colorectal cancer screening
- Admittance to specialized palliative care prior to cancer-related death
- Stage-specific survival
Method
The project consists of five interrelated studies based on data from national registers and clinical databases. Each of the five studies represent a phase in the cancer trajectory, and in each study, we will compare cancer-related outcomes among individuals with and without intellectial disability.
A nationwide cohort of individuals with intellectual disability (N=67,878) will serve as our main cohort from which we will identify the populations used in the five studies. The cohort comprises five diagnostic groups most likely leading to intellectual disability: intellectual disability diagnosis, cerebral palsy with intellectual disability, Down’s syndrome, metabolic disorder, and congenital malformation/chromosomal disorder. The most common diagnostic group is individuals with an intellectual disability diagnosis (N=56,025), with mild intellectual disability being the most frequent (N=22,968).
Project period
January 1 2024 – December 31 2025
Funding:
The Danish Cancer Society
The daily research team at the National Institute of Public Health, University of Southern Denmark:
- Professor, Lau Caspar Thygesen
- Assistant Professor, Trine Allerslev Horsbøl
- Senior Researcher, Susan Ishøy Michelsen
- Professor Emeritus, Knud Juel
Collaborators:
- Professor Susanne Oksbjerg Dalton, Survivorship and Inequality in Cancer, Danish Cancer Society, Research Center, Copenhagen, Denmark & Danish Research Center for Equality in Cancer (COMPAS), Department of Clinical Oncology & Palliative Care, Zealand University Hospital, Næstved, Denmark
- Professor Ismael Gögenur, Center for Surgical Science, Zealand University Hospital, Køge, Denmark
- Professor Mogens Grønvold, Palliative Care Research Unit, Bispebjerg and Frederiksberg Hospital, Copenhagen, Denmark
Advisory group- representatives from:
- LEV (a nongovernmental organisation for people with intellectual disability and their relatives)
- Disabled Peoples Organisations Denmark
- The Danish Disability Counsel
- The Danish Cancer Society