Cancer treatment and decision making in individuals with intellectual disabilities: a scoping literature review.

Adults with intellectual disabilities face disparities in receipt of cancer-related care, which could contribute to an increase in the rate of cancer-related deaths in this population. Yet, relatively little is known about the optimal cancer treatment or treatment decision making in adults with intellectual disabilities. This scoping review assessed PubMed and Embase for available literature on the description of cancer treatment and treatment decision making in patients with intellectual disabilities, published in English between Jan 1, 2000, and April 30, 2020. We appraised 90 included articles and extracted quotes addressing aspects related to cancer treatment and treatment decision making in patients with intellectual disabilities. Themes and subcategories were subsequently derived. Our findings revealed that the available literature describes that people with intellectual disabilities tend to have less intensive cancer treatment than generally administered, but with little evidence supporting this approach. This finding indicates that this medically vulnerable patient population needs tailored attention in both cancer care and research. We propose changes to practice and conclude by addressing the urgent need to pay specific attention to this patient population.

Cancer-related mortality among people with intellectual disabilities: A nationwide population-based cohort study.

BACKGROUND: Concerns have been raised about access to cancer screening and the timely receipt of cancer care for people with an intellectual disability (ID). However, knowledge about cancer mortality as a potential consequence of these disparities is still limited. This study, therefore, compared cancer-related mortality patterns between people with and without ID. METHODS: A historical cohort study (2015-2019) linked the Dutch adult population (approximately 12 million people with an ID prevalence of 1.45%) and mortality registries. Cancer-related mortality was identified by the underlying cause of death (according to the chapter on neoplasms in the International Classification of Diseases, Tenth Revision). Observed mortality and calculated age- and sex-standardized mortality ratios (SMRs) with 95% confidence intervals (CIs) were reported. RESULTS: There were 11,102 deaths in the ID population (21.7% cancer-related; n = 2408) and 730,405 deaths in the general population (31.2%; n = 228,120) available for analysis. Cancer was noted as the cause of death more often among people with ID in comparison with the general population (SMR, 1.48; 95% CI, 1.42-1.54), particularly in the young age groups. High-mortality cancers included cancers within the national screening program (SMRs, 1.43-1.94), digestive cancers (SMRs, 1.24-2.56), bladder cancer (SMR, 2.07; 95% CI, 1.61-2.54), and cancers of unknown primary (SMR, 2.48; 95% CI, 2.06-2.89). CONCLUSIONS: Cancer was reported as the cause of death approximately 1.5 times more often in people with ID compared with the general population. This mortality disparity may indicate adverse effects from inequalities in screening and cancer care experienced by people with ID. LAY SUMMARY: People with an intellectual disability (ID) may find it challenging to participate in cancer screening or to receive timely cancer care. To understand potential consequences in terms of mortality, this study compared cancer-related mortality between people with and without ID in the Netherlands. Cancer was reported as the cause of death approximately 1.5 times more often among people with ID than others. Because large differences were found that were related to screening cancers and cancers for which the primary tumor was unknown, this study's results raise concerns about equality in screening practices and cancer care for people with ID.

Cardiopulmonary Profile of Individuals with Intellectual Disability.

INTRODUCTION: Individuals with intellectual disabilities (ID) are often sedentary and have low fitness levels. Current knowledge supports the existence of physiological barriers resulting in low fitness and exercise intolerance in individuals with Down syndrome, which might be applicable to other ID etiologies. If physiological barriers exist in ID, this would require adaptation of the physical activity guidelines. PURPOSE: The aim of this study was to assess differences in cardiopulmonary profiles, including maximal oxygen uptake, during a cardiopulmonary exercise test in individuals with ID without Down syndrome and healthy controls. METHODS: Participants performed an incremental cardiopulmonary exercise test on a treadmill until exhaustion. Outcomes were peak heart rate (HRpeak), absolute peak oxygen uptake (V˙O2peak), relative V˙O2peak, peak minute ventilation, peak CO2 expenditure, oxygen uptake efficiency slope, V˙E/V˙CO2 slope, absolute O2 pulse, relative O2 pulse, difference from predicted HRpeak, HR reserve, RERpeak, ventilatory threshold (VT), and VT as a percentage of V˙O2peak. Differences between groups were analyzed with Student's t-tests and multiple linear regression after adjusting for potential confounders (sex, age, body mass index, and activity level). RESULTS: Individuals with ID had worse outcomes on all of the cardiopulmonary outcomes, except for VT expressed as a percentage of V˙O2peak and V˙E/V˙CO2 slope (P < 0.05). Having ID was an independent predictor of reduced physiologic function during exercise (P < 0.05). CONCLUSION: These results demonstrate that individuals with ID present exercise intolerance potentially related to lower HRpeak and impairments in ventilatory function, and these results also suggest the possibility of peripheral muscle hypoperfusion. Existing physical activity guidelines likely underestimate the actual intensity of activity performed by individuals with ID and need to be adapted.