Abstract LB138: The conception of an Oncology Neurodiversity Work Group to address cancer disparity for individuals with autism and intellectual or developmental disability (IDD) at the Sidney Kimmel Cancer Center
Authors: Bhatia Avnish K. , Fossi Alexander , Goodspeed Brooke L. , Tobias Jane , McNair Christopher , McBee Dwight , Ross Wendy 
Published: April 2023

Studies have suggested that autistic individuals are as much as 30% more likely to receive a cancer diagnosis which may be associated with co-occurring IDD or birth defects. Following a diagnosis of cancer, outcomes have been documented to be significantly worse for autistic individuals. Autistic individuals experience numerous barriers to care across healthcare settings, including a lack of appropriate communication with providers, a lack of accommodating healthcare environments, lack of mental health support, and too few providers who are trained in working with individuals with autism or IDD. This leads to numerous negative health outcomes, including lower likelihood of having a regular source of care, lower satisfaction with healthcare, reduced screening utilization, delays in recognizing early symptoms of disease, higher ED utilization, and anxiety and stress associated with healthcare visits.

We report on the results of a recent Medical Oncology provider survey conducted from 10/31/22 - 12/16/22 to evaluate for opportunities to address barriers to care facing individuals with autism and/or IDD. Of the 49 respondents comprised of physicians and nurse practitioners, 93.9% (46) noted receiving five or fewer hours of specific training or education regarding caring for populations with IDD. Additionally, providers cited the following barriers most commonly related to delivery care to patient with IDD: Lack of strategies to enhance communication on site (32, 65.3%), Inadequate time allotted for visits (28, 57.1%), Inadequate staff training and education related to this group (27, 55.1%), Limited resources to support vulnerable or lower socio-economic status populations (22, 44.9%), and Fragmentation of care (19, 38.8%).

The Sidney Kimmel Cancer Center and the Jefferson Center for Autism & Neurodiversity have collaborated to develop a culturally competent care design aimed at understanding the needs of our neurodiverse population through a joint research effort. The results of our Medical Oncology provider survey identified the need for training of providers and staff to optimize the patient experience, creation of accessible cancer screenings, and the adoption of an environment that supports the sensory and communication abilities and needs of neurodivergent patients. Providers that adopt best practices in the care of autistic and/or IDD individuals have noted that patients and families report marked improvement in the rating of their patient experience in the visit. The desired product is care plans, appropriate medical settings, and trained providers that will meet the needs of this population and improve overall health outcomes.

Citation Format: Avnish K. Bhatia, Alexander Fossi, Brooke L. Goodspeed, Jane Tobias, Christopher McNair, Dwight McBee, Wendy Ross. The conception of an Oncology Neurodiversity Work Group to address cancer disparity for individuals with autism and intellectual or developmental disability (IDD) at the Sidney Kimmel Cancer Center [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 2 (Clinical Trials and Late-Breaking Research); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(8_Suppl):Abstract nr LB138.