Cancer diagnoses among older people with intellectual disability compared with the general population: a national register study.
Older adults with ID are diagnosed with cancer less often, but breast and colorectal cancers still show up—so stay alert and keep screening active.
01Research in Context
What this study did
Lotfizadeh et al. (2020) used Swedish national registers to compare cancer diagnoses in older adults with intellectual disability (ID) to same-age peers without ID.
They looked at every person aged 55 and up who had an ID diagnosis and checked who later got any type of cancer.
The team used matched pairs so age, sex and region were equal between the two groups.
What they found
Adults with ID had lower odds of receiving any cancer diagnosis than the general group.
Prostate, urinary and lung cancers showed the biggest gaps, while breast and colon cancers still occurred at similar rates.
In short: fewer cancer records overall, but common types like breast and colorectal still appear, so screening matters.
How this fits with other research
Carson et al. (2017) seems to clash: French women with ID living in institutions had breast-cancer rates matching the general public. The difference is setting. D et al. looked at everyone in the country, while B et al. studied only people in facilities where mammography programs are stricter.
Heald et al. (2020) extends the story. Using the same Swedish registers, they show that when older adults with ID do get cancer, they see specialists half as often and die at home more. Lower diagnosis plus lower service use points to a care gap, not lower need.
Amaral et al. (2017) and Tyrer et al. (2009) add context: adults with ID already die 15-20 years earlier from many causes, including some cancers. Under-diagnosis may hide part of that excess risk.
Why it matters
For BCBAs in health or adult day programs, cancer can be easy to miss. Behaviors that signal pain—new self-injury, sleep loss, refusal to walk—might be the only clues. Keep routine breast and colon screening on the care plan, push for specialist visits when red flags appear, and document changes so medical teams have data to act on.
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02At a glance
03Original abstract
BACKGROUND: Cancer occurrence among older people with intellectual disability (ID) is poorly documented, so we investigated the frequency and distribution of cancer in older people with ID compared with the general population. METHOD: People with ID who were ≥55years old and alive at the end of 2012 (n = 7936; ID cohort) were identified through a national register of people with ID who received social services in Sweden to optimise the individual's opportunity for good living conditions in daily life. An equally large reference cohort from the general population (gPop cohort) was matched by year of birth and sex. Cancer diagnoses registered in inpatient and outpatient specialist care were collected for 2002-2012 from the ID cohort and compared with diagnoses in the gPop cohort. RESULTS: A lower total cancer frequency was observed in the ID cohort, which contained 555 cancers, compared with 877 cancers in the gPop cohort [odds ratio (OR): 0.63; 95% confidence interval (CI): 0.57-0.70]. Women accounted for 60% of cancers in the ID cohort. Breast and gynaecological organ cancers had similar or slightly lower frequencies in the ID cohort than in the general population, with breast OR of 0.95, uterine corpus OR of 1.00 and ovary OR of 0.73. Surprisingly, cancer frequency of the digestive organs (OR: 0.67), including the colon (OR: 0.82), was lower than in the general population. Cancers of the prostate (OR: 0.25), urinary tract (OR: 0.42) and lung were less frequent than in the general population. CONCLUSIONS: Cancer was diagnosed less frequently in the ID cohort than in the gPop cohort. However, cancers of the breast and colon-rectum remain frequent in people with ID and therefore warrant prevention policies, monitoring and screening similar to those of the general population.
Journal of intellectual disability research : JIDR, 2020 · doi:10.1111/jir.12734