Obtain family history
Proactively obtain information on family history of cancer and review annually.234
Strongly Recommended
Empirical Ecosystem Expert Experiential
Cancer screening (eg, for cervical, breast, and colorectal cancer) is less likely to be received by people with IDD than by those in the general population.230, 231 Factors include lack of knowledge of family history to inform screening intervals, logistic challenges performing certain screening, lack of adapted patient education tools, and family member reluctance and fears related to the perceived excessive burdens of possible cancer treatment.232, 233
Use adapted clinical tools
Use clinical tools adapted for people with IDD to promote education and uptake of cancer screening tests.235
Strongly Recommended
Empirical Ecosystem Experiential
Cancer screening (eg, for cervical, breast, and colorectal cancer) is less likely to be received by people with IDD than by those in the general population.230, 231 Factors include lack of knowledge of family history to inform screening intervals, logistic challenges performing certain screening, lack of adapted patient education tools, and family member reluctance and fears related to the perceived excessive burdens of possible cancer treatment.232, 233
Discuss concerns with family or caregivers
Discuss concerns regarding cancer and symptom management with family and other caregivers and provide information regarding management and palliative care.232
Strongly Recommended
Empirical Ecosystem Experiential
Cancer screening (eg, for cervical, breast, and colorectal cancer) is less likely to be received by people with IDD than by those in the general population.230, 231 Factors include lack of knowledge of family history to inform screening intervals, logistic challenges performing certain screening, lack of adapted patient education tools, and family member reluctance and fears related to the perceived excessive burdens of possible cancer treatment.232, 233
Perform a total-body screen
Perform a total-body screen for skin lesions, breast and testicular examination in adults with IDD during periodic health assessments. Use easy-to-read information materials to inform people with IDD about these examinations prior to assessment (eg, EasyHealth easy-read leaflets).26
Recommended
Empirical
People with IDD are less likely to be supported to self-monitor and report early symptoms and signs of cancer. Those who do develop cancer often have more advanced cancer at the time of detection than those in the general population.236
Instruct patients regarding self-monitoring
Proactively instruct patients regarding self-monitoring, as is considered routine among those in the general population (eg, being breast aware, reporting gross hematuria, melena and changes in moles).237
Recommended
Empirical Expert
People with IDD are less likely to be supported to self-monitor and report early symptoms and signs of cancer. Those who do develop cancer often have more advanced cancer at the time of detection than those in the general population do.236
Instruct family and caregivers on signs and symptoms
Instruct family and other caregivers regarding observable signs and symptoms of cancer and, if detected, to seek prompt medical attention.237, 238
Recommended
Empirical Expert
People with IDD are less likely to be supported to self-monitor and report early symptoms and signs of cancer. Those who do develop cancer often have more advanced cancer at the time of detection than those in the general population do.236
EasyHealth
The UK based EasyHealth website provides over 500 leaflets with accessible health information, including the topic of cancer screening, designed by different organizations. EasyHealth is run by Generate Opportunities Ltd.
26. Generate Opportunities. Easyhealth: Health leaflets, food and exercise, health videos, useful things for your health care [Website]. London, UK: Generate. Accessed 2017 Oct 25.
230. Cobigo V, Ouellette-Kuntz H, Balogh R, Leung F, Lin E, Lunsky Y. Are cervical and breast cancer screening programmes equitable? the case of women with intellectual and developmental disabilities. J Intellect Disabil Res. 2013;57(5):478-88.
231. Ouellette-Kuntz H, Coo H, Cobigo V, Wilton AS. Uptake of colorectal cancer screening among Ontarians with intellectual and developmental disabilities. PLoS One. 2015;10(2):e0118023.
232. Greenwood NW, Dreyfus D, Wilkinson J. More than just a mammogram: Breast cancer screening perspectives of relatives of women with intellectual disability. Intellect Dev Disabil. 2014;52(6):444-55.
233. Merten JW, Pomeranz JL, King JL, Moorhouse M, Wynn RD. Barriers to cancer screening for people with disabilities: A literature review. Disability and Health Journal. 2015;8(1):9-16.
234. Canadian Task Force on Preventive Health Care. CTFPHC guidelines [Website]. Canadian Cancer Society. 2016. Accessed 2016 Nov 30.
235. Centre for Developmental Disability Health Victoria, Pap Screen Victoria. Pap test: The plain facts. 2011.
236. Satge D, Sauleau E-, Jacot W, Raffi F, Azema B, Bouyat J-, et al. Age and stage at diagnosis: A hospital series of 11 women with intellectual disability and breast carcinoma. BMC Cancer. 2014;14(1).
237. Canadian Breast Cancer Foundation. Be breast aware [Website]. Canadian Cancer Society. 2016. Accessed 2016 Nov 30.
238. Canadian Cancer Society. Signs and symptoms of breast cancer [Website]. Canadian Cancer Society. 2016. Accessed 2017 Oct 25.
