Cancer and the Intellectual Disability (ID) Population
World Lung Cancer Day is 8/1/19
According to the National Cancer Institute, cancer occurs when body cells begin to divide without stopping, and spread into surrounding tissue. As this proliferation continues, tumors may form (although tumors do not form with certain cancers like leukemia). As the cancer begins to grow, some tumors may break off and travel to other parts of the body. This process is known as metastasis.
Historically, cancer rates in people with an intellectual disability have been lower than rates in the general population. However, with advances in medical care leading to a longer life expectancy for those with ID, their rates of cancer are becoming more consistent with rates in the general population.
Past research has shown that certain forms of cancer may have an increased or decreased incidence in the ID population. For example, men with ID can have an increased risk of leukemia, brain, and stomach cancers, and a reduced risk of prostate cancer. Women with ID can show an increased risk for leukemia, uterine and colorectal cancers, but lower rates of breast cancer.
Despite this fact, there remain inequities in the care of those with ID involving prevention, screening, monitoring, diagnosis and treatment of cancer. Considering recognition of the above facts, here are a few points to consider when working as advocates for people with ID.
- Ensure that along with individuals, family and Direct Support Staff (DSPs) receive training on risk factors for cancer (e.g. smoking, obesity, sun exposure).
- Encourage activities such as healthy eating, exercise, cessation or avoidance of smoking and minimizing sun exposure.
- Advocate with the individual’s physician for recommended screenings.
- Educate individuals on the purpose of cancer screening and encourage participation in the process, taking whatever steps are needed to ensure that the person’s needs are met.
- If diagnosed, ensure that the diagnosis and options are discussed with the individual by his/her physician: Allow them to be a decision maker in their own health.
- Support the person, family and DSPs throughout whatever process results from this diagnosis, with training and stress reduction activities.
- Provide physical and emotional care and support during treatment and/or end of life care for the person.
The PCHC Health Promotion Activity Plan (HPAP) for cancer is an easy way to plan supports for someone with this diagnosis. The plan can be personalized to an individual’s needs. It can be found at: https://www.pchc.org/images/PDFs/HPAPs/Cancer%20-%20Generic%20Version.pdf