A recent large, retrospective study by Giblon et al has found that individuals with intellectual and/or developmental disabilities face an increased risk of developing cancer, higher symptom burden once they get cancer compared with those without such disabilities, and disparities in accessing quality cancer care.1 According to the study’s results, patients with both cancer and intellectual and/or developmental disabilities often experience greater levels of anxiety, depression, drowsiness, pain, shortness of breath, fatigue, and poor well-being, as well as diagnostic delays. They also often face worse survival outcomes in a variety of cancers, including breast, colorectal, and lung cancers.2
Intellectual and/or developmental disabilities encompass a broad range of conditions, including autism, cerebral palsy, and Down syndrome, that may affect cognition, learning, and adaptive behaviors such as communicating, socializing, and daily living, all of which may contribute to delayed cancer care and worse mortality rates for these patients.
“Not all individuals with [intellectual and/or developmental disabilities] have verbal communication challenges, but many do, especially in unfamiliar environments like a hospital setting,” said Melissa Levin, MSW, LICSW, Senior Social Worker and Programmatic Specialist in the Neuro-Inclusive Oncology Care and Empowerment Program at Dana-Farber Cancer Institute. “There can also be misunderstandings about symptoms patients may be having, which can contribute to poor communication, as well, from both the patient and the provider. For example, I’ve heard from patients about their primary care experiences, including when a patient with [disabilities] presented with gastrointestinal problems and the assumption was that the issue was related to the patient’s disability or ongoing symptoms of gastroesophageal reflux disease, and was not investigated further. Or when an older adult female patient misinterpreted blood in her urine for menstrual blood and did not know to report it to her physician. In both scenarios, it can mean a missed or delayed diagnosis of cancer, and a worse survival outcome.”
We want to make our patients as comfortable as possible, so they can access the same standards-of-care as patients who do not have [intellectual and/or developmental disabilities].— Melissa Levin, MSW, LICSW
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To reduce inequities in cancer care for individuals with intellectual and/or developmental disabilities and improve survival outcomes for these patients, in 2024, Dana-Farber Cancer Institute launched the Neuro-Inclusive Oncology Care and Empowerment Program. The program is designed to provide specialized care for patients with intellectual and/or developmental disabilities throughout their survivorship trajectory, as well as increased training on effective communication for health-care providers. Currently, over 60 patients with these disabilities have benefited from the program.
In this interview with The ASCO Post, Ms. Levin discussed the barriers to accessing patient-centric care, how communication between physician and patient can be improved, and how staff training in caring for patients with special needs can improve the treatment experience for patients and potentially disease outcome.
Improving Access to Cancer Care
Please talk about the barriers to accessing cancer care for patients with intellectual or developmental disabilities.
There are many barriers to accessing care for these patients. First, medical and nursing schools do not typically provide training in caring for people with intellectual and/or developmental disabilities, despite the fact that every health-care provider will interact with these patients during their career.
Training is needed on how to effectively communicate with people who are verbal but need additional processing time, as well as training for how to communicate with individuals who are non-speaking and utilize augmentative and alternative communication devices.
Some patients with [intellectual and/or developmental disabilities] have difficulty with interoception. Identifying and expressing symptoms of pain, fatigue, and emotional distress differently than neurotypical patients can mean that symptoms go unreported and are not adequately addressed and managed. This problem is compounded when the care team is unfamiliar with communication practices that may support patients with disabilities as they describe their symptoms. Further, transportation to and from the cancer center is an ongoing barrier for many patients with intellectual and/or developmental disabilities.
All of these factors contribute to inaccessibility to cancer care and to delayed and missed diagnoses, and worse outcomes for patients compared with patients without these conditions. Many of the patients with intellectual and/or developmental disabilities that I have supported thus far already have metastatic disease when they come into the cancer center.
A recent study found that patients with intellectual and/or developmental disabilities have worse outcomes after the surgical treatment of cancer,3 and the reasons are multifactorial, including how individuals are engaging with a health-care system that is designed for patients who are able-bodied and neurotypical. Patients with intellectual and/or developmental disabilities are more likely to have heightened sensory sensitivity, which is often exacerbated by overwhelming environments like bright lights, loud noises, and the physical discomfort of procedures. This may result in patients experiencing distress during a blood draw or chemotherapy infusion or while undergoing imaging tests, making it more difficult for them to receive care.
In our program, we examine the sensory experiences our patients have and determine how we can proactively prepare them for various tests and treatments by presenting information in ways that are understandable and actionable, and by creating personalized plans to help them cope with stressors. We want to make our patients as comfortable as possible, so they can access the same standards-of-care as patients who do not have intellectual and/or developmental disabilities.
We have many patients with profound autism and other intellectual disabilities, and if we can team up and be thoughtful and creative, we can find ways to support these patients and help them get through cancer treatments and, hopefully, to a good outcome.
Providing Whole-Workforce Training
How can communication between health-care providers and patients with intellectual and/or developmental disabilities be improved?
In our Neuro-Inclusive Oncology Care and Empowerment Program we have put a lot of human power toward developing whole-workforce disability training for the entire hospital staff, so they are as comfortable as possible when they have a patient with a disability. For example, we work closely with people with lived experience and with intradisciplinary staff members through our institute’s Disability Competency Care Committee to provide training, support, and reinforcement to all of our medical specialties, including medical and radiation oncologists, advanced practitioners, infusion nurses, palliative care physicians, social workers, nutritionists, psychologists, psychiatrists, and supportive staff, including security personnel, patient navigators, as well as our receptionists and billing staff.
Our view is that all staff members need to be brought into disability-affirming care, because every staff member plays a role in inclusive care.
Mitigating the Negative Effects of Implicit Bias
Do the health-care providers involved in these patients’ care undergo specialized training to address implicit bias?
Every year, each staff member, both patient-facing and non-direct patient-facing, has to complete basic training in understanding and addressing the issues patients with intellectual or developmental disabilities face when they come into our cancer center. This training includes best practices in effective communication, for example, by using clear and simple language, incorporating visual aids, and looking directly at the patient while speaking. We also rolled out a training program that dives further into managing implicit biases to mitigate the negative effect of implicit bias on patients.
The more proactive we can be in making our clinical environments accessible and in increasing patient comfort while undergoing treatment, the better their experience will be, which will, hopefully, result in timelier, more successful treatment, and improved outcomes.
Quantifying the Success of a Neuro-Inclusive Oncology Care Program
What results have you seen in better outcomes for patients since you launched the Neuro-Inclusive Oncology Care Program?
It’s too early in the program to do any quantitative analysis, but our research team is just starting to gather data to evaluate how successful the program has been so far. Anecdotally, based on the responses we’ve had from our patients, their family members, and our medical teams, the program is a huge success. Providers have shared with me that their patients and their family members reported that having a program that prepares patients for what to expect during their cancer treatment, not only in medical terms, but in psychosocial and sensory terms, has been helpful in making the experience more pleasant for patients. Through the program, patients have reported that they have a better understanding of what’s happening to their body and can better communicate those feelings to their medical team.
Several patients have said that they didn’t know if they could have gone through with their treatment protocol if they hadn’t had patient navigators by their side bringing them to their treatment site, addressing in-the-moment accessibility challenges, and providing positive reinforcement and distraction. That’s the kind of tailored support some patients with intellectual and/or developmental disabilities need to successfully complete their treatment.
Family members have told us that being able to engage with a neuro-inclusive support team has resulted in feeling that their loved one is being treated with dignity and respect and that the patient’s quality of life is anchored around what is important to them.
Creating a supportive environment and opportunity to talk about disability in dignified ways provides patients with intellectual and/or developmental disabilities greater accessibility to quality cancer care and the increased chance for a positive survival outcome. That is our goal for all of our patients with cancer.
Footnote: Melissa Levin, MSW, LICSW, is a Senior Social Worker and Programmatic Specialist in the Neuro-Inclusive Oncology Care and Empowerment Program at Dana-Farber Cancer Institute.
DISCLOSURE: Ms. Levin has no conflicts of interest to declare.
REFERENCES
1. Giblon R, Sutradhar R, Hallet J, et al: Intellectual and developmental disabilities and cancer symptom severity: a matched retrospective cohort study. Psychooncology 34(6):e70199, 2025.
2. Nye J: Intellectual or Developmental Disability Tied to Worse Cancer Survival. March 25, 2024. Available at www.neurologyadvisor.com/news/intellectual-developmental-disability-worse-cancer-survival/. Accessed November 17, 2025.
3. Resende V, Woldesenbet S, Katayama E, et al: Association of intellectual and developmental disabilities with worse outcomes after surgical treatment of cancer. J Natl Compr Canc Netw 22(9):610-616, 2024.
