Program helps adults with intellectual, developmental disabilities on cancer journey
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Dana-Farber Cancer Institute launched a neuro-inclusive oncology care and empowerment program designed to support adults with intellectual and/or developmental disabilities on their cancer journeys.
The program, developed by Dana-Farber’s psychosocial oncology and palliative care department, serves patients with cancer who have autism spectrum disorder, Down syndrome, cerebral palsy, epilepsy, fragile X syndrome and other conditions.
Compared with patients who are neurotypical, those with intellectual or developmental disabilities (IDD) are more likely to be diagnosed with cancer at later stages, encounter delays in care, be offered fewer treatment options and die of cancer.
The neuro-inclusive oncology care and empowerment program acknowledges these barriers and engages multidisciplinary teams at Dana-Farber to improve the equity and accessibility of care throughout a patient’s cancer trajectory.
“People who have cancer often experience compounded physical, cognitive and emotional stressors as they navigate their diagnosis, prognosis and treatment,” Melissa Levin, MSW, LICSW, senior clinical social worker at Dana-Farber, told Healio. “When a person who is facing cancer is also neurodivergent, these stressors are often amplified. The health care system is not naturally set up to provide proactive and ongoing tailored support that can make the difference in whether a person with IDD is truly provided with accessible and comprehensive care.”
Healio spoke with Levin about the unique challenges faced by patients with IDD and discussed how the new program is designed to address the gaps in care that may impact these patients.
Healio: How did this program come about?
Levin: The program is embedded within the department of social work, psychosocial oncology and palliative care at Dana-Farber. As social workers, we focus on the needs of underserved populations and seek to empower our patients by collaboratively addressing barriers to care. We found a similarly focused and passionate partner in the C.J.L. Foundation, which also recognized the unique challenges faced by people with IDD who are navigating cancer. This shared focus and recognition of the challenges faced by patients with IDD led to our program’s creation.
Patient family advisory council members, local disability self-advocates and the caregivers of patients with cancer who have disabilities provided instrumental feedback throughout our needs assessment, programmatic development and implementation, and they will continue to provide ongoing evaluation as our program grows.
Healio: Why is a specialized program like this needed?
Levin: People with IDD have unique health care needs stemming from the interactions between their disabilities and the environment. For example, fast-paced, highly stimulating medical environments can be inaccessible or cause sensory overload.
We must recognize the impact of the health care system’s processes and environments to truly support patient who are neurodivergent. Often, people with disabilities are given feedback about what they should do differently to adjust to a situation or barrier. At Dana-Farber, we recognize that to make oncology care accessible for patients with IDD, the onus is not solely on the patient. Rather, we must work to identify and address systemic barriers, like utilizing accessible medical equipment, improving patient-provider communication and developing health-literate materials. Simultaneously, specialized psychosocial assessment and supportive counseling can be tailored to each person’s individual strengths, communication preferences and neurodevelopmental profile.
Healio: What does it offer and how does it help these patients?
Levin: The program provides specialized education and care aimed at improving health care outcomes and reducing the distress that often accompanies a cancer diagnosis and treatment for oncology patients who have IDD.
Our compassionate, inclusive aims of care include building supportive relationships with patients and caregivers; utilizing an affirming, neurodevelopmental lens to tailor psycho-social assessment; previewing what to expect when attending appointments and treatments; developing strategies and visual aids, such as social stories as a supportive visual tool to explore what may occur during treatment; exploring sensory or physical accommodations that can be made to the environment; providing supportive counseling using evidence-based and inclusive practices; and educating, consulting and providing interventions to care teams to promote disability-competent care.
Healio: Can you describe the program’s scope?
Levin: The experiences of patients with IDD have been underrecognized for years, in part because disability has not been captured in the same way that other demographic identifiers are captured in electronic health records. Dana-Farber systematically screens incoming patients about their disability identities and accommodations. We serve patients directly in the form of tailored assessment, individual counseling and creating therapeutic materials. We also support patients in a more peripheral manner by consulting with their providers and providing neuro-inclusive health care trainings. As awareness of our disability-affirming practice grows, we expect to serve a greater number of patients.
Healio: What impact do you think this will have on treatment outcomes and/or quality of life?
Levin: We predict that our supportive services will decrease the distress experienced by patients with IDD and their caregivers. We hope that when people have comprehensive access to care and their stressors are holistically supported, they will experience improved communication of their needs, engagement with their treatment teams and, as a result, better quality of life throughout their care.
Healio: Will the program evolve or expand over time?
Levin: From the beginning, we recognized that this program would grow in size and scope as we connect with more patients and medical teams and learn more intricately about patients' needs and barriers to care. As awareness grows, we anticipate serving a greater volume of patients. We will shape our care and expand our team accordingly.
Representation and the full participation of people with IDD in decision-making about their lives matters to us. We will continue to involve people with disabilities, and their caregivers, at every stage of development. They are the experts who can educate us about what they need, what their experiences have been and where improvements are needed.
Healio: Could this program serve as a model for other institutions? If so, what advice would you give to others who want to implement a similar program?
Levin: We aim to serve as a model from which other institutions and providers can learn and, hopefully, replicate in a way that is most feasible for their setting. We are passionate about advancing the cause to improve the quality of care and advance health equity for all people with disabilities.
Reference:
- Dana-Farber Cancer Institute launches neuro-inclusive oncology care and empowerment program (press release). Available at: https://www.dana-farber.org/newsroom/news-releases/2024/dana-farber-cancer-institute-launches-neuro-inclusive-oncology-care-and-empowerment-program. Posted March 15, 2024. Accessed April 12, 2024.
For more information:
Melissa Levin, MSW, LICSW, can be reached at neuro-inclusive@dfci.harvard.edu.
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