End-of-life care among older cancer patients with intellectual disability in comparison with the general population: a national register study.

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.

• Authors: M Segerlantz, A Axmon, G Ahlström
• Journal: Journal of intellectual disability research : JIDR (J Intellect Disabil Res) Vol. 64 Issue 5 Pg. 317-330 (05 2020) ISSN: 1365-2788 [Electronic] England
• PMID: 32067284 (Publication Type: Comparative Study, Journal Article, Research Support, Non-U.S. Gov't)
• Copyright: © 2020 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd.

Topics

• Aged
• Aged, 80 and over
• Cause of Death
• Cohort Studies
• Comorbidity
• Facilities and Services Utilization (statistics & numerical data)
• Female
• Group Homes (statistics & numerical data)
• Hospitalization (statistics & numerical data)
• Humans
• Intellectual Disability (epidemiology, nursing)
• Male
• Neoplasms (epidemiology, nursing)
• Registries (statistics & numerical data)
• Sweden
• Terminal Care (statistics & numerical data)