Cancer Screening for People with Disabilities

Approximately 57 million people, nearly 20 percent of the United States population, live with some type of disability, including 6 million people with intellectual and developmental disabilities (IDD). People can benefit from receiving appropriate health care support, education, information, and resources aimed at preventive health care and early detection cancer screening whether a disability exists or not.

In order to responsibly care for those with disabilities, awareness of the lifestyle issues and barriers to healthcare is an important place to start, and can help us as caregivers and health professionals advocate, wherever possible, to mitigate these barriers.

What are the lifestyle issues related to cancer screening for individuals with IDD?

There are lifestyle concerns for those with IDD.

Higher Rates of Non-Hereditary Health Conditions

People with IDD may be primarily dealing with their disability as a health concern, but we know that this population has higher rates of obesity, diabetes, and heart disease than those without disabilities, and they smoke at higher rates. The most common causes of death among individuals with IDD are cardiovascular diseases, respiratory illness, and neoplastic conditions all of which can be influenced or caused by smoking or environmental tobacco smoke exposure.

Nutrition and Diet

A healthy diet that regulates body weight can help reduce cancer risk. But people with disabilities can find it more difficult to always eat healthy and control their weight. This might be due to a lack of healthy food choices, difficulty with chewing or swallowing food, which can lead them to eat softer, more processed, and frequently less nutritious foods, or with the taste or texture of foods. Treats may also be used by caregivers to soothe or reward behavior.

Higher Rates of Obesity

Intentional weight loss has been seen to reduce cancer risks as high as 78%; however, weight loss for people with IDD is challenging for many reasons, including nutrition and diet, certain medications that contribute to weight gain and changes in appetite, and also lack of physical activity.

Lack of Physical Activity

Physical activity is critical to good health with many benefits including heart health, mental health, maintaining a healthy weight, and it can reduce cancer risk, incidence and tumor growth.

In New Jersey, 44.3% of people with disabilities are inactive, compared to 26.2% of people in New Jersey without disabilities. Those with IDD could encounter mobility limitations, pain, a lack of energy, a lack of accessible environments, a lack of resources including money, transportation, and support from family, friends, neighbors, and community.

 

What are the healthcare barriers for adults with IDD?

There is a long list of healthcare access barriers for adults with IDD.

  • One third of all people with IDD do not have a primary healthcare provider.
  • Twenty-five percent of people with IDD do not have an annual physical or routine check-up.
  • One third of all people with IDD have an unmet healthcare need due to the cost of care.
  • Transportation to and from care is one of the greatest barriers in New Jersey (according to a North Jersey Health Collaborative survey) not only affecting those with IDD, but for those without a disability as well.
  • There may be a lack of understanding of why a test might be needed.
  • Family medical history is not known.
  • Individuals may not have someone who can advocate for their health.
  • Fear and anxiety are reported as one of the top reasons for not getting cancer screenings.
  • Complexities of insurance and paperwork can make it challenging for someone with intellectual disability.
  • Physical challenges to perform a test such as standing for a mammography screening exist. Screening for breast cancer for women without disabilities is 60% higher than those with IDD.
  • Preparing for a cancer screening such as colonoscopy, where prep failure rates are higher in those with IDD is a challenge. Screening rates for colonoscopy are higher for those without disabilities.

 

Cancer screening is so important because early detection of cancer can prevent cancer, and result in better outcomes.

What are the screening guidelines? (American Cancer Society)

  • Cervical cancer screening is recommended at age 25, and every 3 years until age 65.
  • Breast cancer screening is recommended beginning at age 45, with the option to begin at age 40, then continue to have annual breast exams until age 55, then every two years.
  • Colorectal cancer screening is recommended for everyone beginning at age 45. If there is a family history, then earlier than 45 is recommended.
  • Since 1 in every 10 cases of colorectal cancer occur in individuals in their 40’s, it’s important to start screening at the age of 45. Screening should continue at regular intervals until the age of 75. After that time, a process of shared decision-making between a patient and provider should take place that weighs the risks versus benefits of a colorectal cancer screening. Screening is no longer recommended after the age of 85, as the risks outweigh the benefits.
  • At age 45, African-Americans should discuss prostate cancer screening with a doctor. For all men, discussing prostate cancer screening with a doctor is recommended.
  • At age 50, people who currently smoke or formerly smoked should discuss lung cancer screening with a doctor.

Disability is not an illness.  Health care and screenings must be accessible to all people.  Screening can and does prevent certain cancers and cancer death. We must continue to work together to break down barriers to care for those with IDD.

Mary Ellen Zung, BA is a Cancer Screening and Health Educator with the North Jersey Health Collaborative through a grant from ScreenNJ. She can be reached at maryellen@njhealthmatters.org.