End-of-life care among older cancer patients with intellectual disability in comparison with the general population: a national register study.
Older cancer patients with ID receive half the specialist visits and mostly die at home—so schedule regular oncology check-ins yourself.
01Research in Context
What this study did
The team looked at every Swede over 55 who died of cancer between 2007-2016.
They split the group into people with and without intellectual disability.
Then they counted specialist visits and where each person died.
What they found
Cancer patients with ID had half as many specialist visits in their last year.
Only a large share of them died in hospital, compared with a large share of other patients.
In other words, they got less medical care and died at home more often.
How this fits with other research
Amaral et al. (2017) already showed that English adults with ID die about 20 years sooner.
That earlier study proved the group has higher death rates; Heald et al. (2020) now shows one reason why—fewer doctor visits near the end.
Carretti et al. (2013) gave us a tool to spot frailty in older adults with ID.
Using that Vienna Frailty Questionnaire during cancer care could flag who needs more appointments before the final decline.
Why it matters
If you serve adults with ID, check that every cancer patient has a named oncology contact.
Add a calendar prompt for specialist visits each quarter.
A simple phone call or transport voucher can close the gap and keep care on par with everyone else.
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02At a glance
03Original abstract
BACKGROUND: Increasing life expectancy for people with an intellectual disability (ID) is resulting in more persons with cancer and a greater need for end-of-life (EoL) care. There is a need for knowledge of health care utilisation over the last year of life to plan for resources that support a high quality of care for cancer patients with ID. Therefore, the aims of the study were to compare (1) health care utilisation during the last year of life among cancer patients with ID and cancer patients without ID and (2) the place of death in these two groups. METHODS: The populations were defined using national data from the period 2002-2015, one with ID (n = 15 319) and one matched 5:1 from the general population (n = 72 511). Cancer was identified in the Cause of Death Register, resulting in two study cohorts with 775 cancer patients with ID (ID cohort) and 2968 cancer patients from the general population (gPop cohort). RESULTS: Cancer patients with ID were less likely than those without ID to have at least one visit in specialist inpatient (relative risk 0.90, 95% confidence interval 0.87-0.93) and outpatient (0.88, 0.85-0.91) health care, during their last year of life. Those with ID were more likely to have no or fewer return visits than the patients in the gPop cohort (5 vs. 11, P < 0.001), also when stratifying on sex and median age at death. Most cancer patients with ID died in group homes or in their own homes and fewer in hospital (31%) as compared with cancer patients in the gPop cohort (55%, 0.57, 0.51-0.64). CONCLUSIONS: Older cancer patients with ID were less likely to be assessed or treated by a specialist. This may suggest that people with ID have unaddressed or untreated distressing symptoms, which strongly contributes to a decreased quality of EoL care and a poor quality of life. There is a need to acquire further knowledge of the EoL care and to focus on adapting and evaluating quality indicators for older cancer patients with ID.
Journal of intellectual disability research : JIDR, 2020 · doi:10.1111/jir.12721