Cancer in deceased adults with intellectual disabilities: English population-based study using linked data from three
Pauline Heslop1, Adam Cook2, Brian Sullivan3
1Norah Fry Centre for Disability Studies, Faculty of Social Sciences and Law, University of Bristol, Bristol, Bristol, UK Pauline.Heslop@bristol.ac.uk.
BMJ Open
|March 25, 2022
Summary
Cancer in adults with intellectual disabilities is often diagnosed late, frequently through emergency presentations. This highlights a need for increased symptom awareness and earlier screening for this population.
Area of Science:
- Oncology
- Public Health
- Intellectual Disabilities Research
Background:
- Cancer diagnosis and outcomes can be challenging in adults with intellectual disabilities.
- Existing research lacks comprehensive data on cancer presentation and stage at diagnosis in this demographic.
Purpose of the Study:
- To enhance understanding of cancer in adults with intellectual disabilities.
- To analyze cancer diagnosis patterns, stage at diagnosis, and causes of death in this population.
Main Methods:
- A population-based study utilized linked data from the Learning (Intellectual) Disabilities Mortality Review (LeDeR) programme, national cancer registry, and NHS Digital.
- Data included 1096 deceased adults with intellectual disabilities in England between January 2017 and December 2019.
- Cancer was identified through LeDeR reviewer records or ICD-10 codes (C00-D49) on death certificates.
Main Results:
- Over a third (35%) of cancer cases in decedents with intellectual disabilities were diagnosed via emergency presentations.
- Nearly half (45%) of cancers were diagnosed at stage IV.
- Digestive system cancers were the most common cause of death (36%), with colorectal cancer accounting for nearly half of these (48%).
Conclusions:
- Cancer symptoms in adults with intellectual disabilities are often identified late and through emergencies.
- Recommendations include increased symptom awareness, lower GP referral thresholds, faster diagnosis/treatment, and consideration of earlier colorectal cancer screening.
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