Addressing Disparities for HNC Patients with Intellectual & Developmental Disabilities

Head and Neck Cancer in Scrabble tiles

The Department of Otolaryngology at the University of Pittsburgh is developing a three-step program to address disparities for head and neck cancer patients with intellectual and developmental disabilities. The Eye & Ear Foundation has submitted a proposal to Edith Trees Charitable Trust and is awaiting final approval.

Individuals with intellectual and developmental disabilities (IDD) encounter significant challenges when it comes to the diagnosis, treatment, and management of cancer. Evidence shows they receive a lower standard of care during cancer treatment and are at a 1.5x greater risk of dying from cancer than a typical patient.

A gap in the medical education of healthcare providers about the care of people with IDD contributes to a substandard quality of care. One crucial aspect is the delayed diagnosis of cancer in people with IDD compared to their counterparts without disabilities. Factors that contribute to this include communication barriers, limited access to healthcare services, and a lack of awareness among healthcare professionals regarding the unique challenges this cohort faces. Difficulties regarding the presentation and assessment of pain symptoms may also result in the under recognition of early signs of cancer. Moreover, the healthcare landscape for people with IDD is often characterized by a higher reliance on palliative care rather than curative treatment options. This group often receives suboptimal cancer treatment.

Studies have demonstrated that when people with IDD receive appropriate treatment following established guidelines, their mortality rates are comparable to, or only slightly higher than those without disabilities. The prevalence of oral and head and neck cancers in this cohort is significantly underestimated, emphasizing the urgent need for extensive research and ethical considerations in this area.

To address these issues, the Department proposes to:

  1. Leverage the population sciences cohort it is developing here in Pittsburgh, and across the nation, study to identify and better understand head and neck cancer patients with intellectual disabilities.
  2. Employ a highly trained patient navigator with special expertise and attention to patients with disabilities to assist patients with IDD in every aspect of their treatment and care. Data will be collected to evaluate what the most prevalent challenges are, which interventions are successful, and which might be less effective.
  3. Develop and disseminate an educational curriculum for physicians, nurses, patient navigators on the unique challenges of caring for head and neck cancer patients with intellectual disabilities. 

“We believe that this approach will help us improve our understanding of the unique challenges that people with IDD face when they are going through cancer care,” the Department said. “We will share our findings and interventions that work best with our peers around the country and world.”