Oncology Healthcare Professionals' Experiences with Individuals on the Autism Spectrum who are also Diagnosed with Cancer
Authors:   , Iannone Stacy , Fisher Kathleen Mary 
Published: May 2024

Background and Review of Literature: A rise in total mortality has been seen in the population of individuals on the autism spectrum, possibly due to the underutilization of healthcare resources leading to unmet demands. One significant condition that has a higher prevalence in this population is cancer. When comparing people with autism spectrum disorder (ASD) to those without, the risk of death from cancer is approximately twofold. Discrepancies in appropriate cancer care, ranging from restricted access to screening to delayed diagnosis and inadequate therapy, have led to differences in outcomes. There is research available regarding the genetic overlap between ASD and cancer. Still, there is minimal research discussing the experiences of oncology healthcare professionals (HCP) with an individual with a dual diagnosis of ASD and cancer. This project focused on healthcare professionals' perspectives on providing care to individuals on the autism spectrum who are also diagnosed with cancer. Purpose: The purpose of this study was to explore oncology healthcare professionals' experiences when managing care for an individual on the autism spectrum who is also diagnosed with cancer. An exploratory qualitative approach was used to describe the experiences of oncology HCP's when managing patients on the autism spectrum who also have a cancer diagnosis, as this important clinical question has not been examined in the research. Methods: This study employed a qualitative inquiry research design through thematic analysis and was conducted in two parts. In part one, participants began with an online survey. At the end of the survey, study participants were able to participate in part two, a zoom or in-person semi- structured interview. Data was analyzed from online Qualtrics surveys, and the interviews were transcribed verbatim and analyzed using thematic analysis. Weekly reflective writings were completed to identify perceived emerging themes. Results: The findings illustrate several challenges that healthcare professionals often encounter when treating patients on the autism spectrum. All participants expressed their needs for further ASD-specific education and training throughout their education. Healthcare professionals indicated it would be beneficial to engage in professional development opportunities that are focused specifically on individuals on the autism spectrum, and that it would provide them with knowledge and hands-on experience. Conclusions: The study's findings emphasize the significance of improving dialogue regarding individuals on the autism spectrum in educational and professional development settings. It is also critical for students and practitioners to obtain clinical experience working with patients on the autism spectrum. Lastly, while education and training have been identified as significant barriers for medical practitioners when treating this population, other facilitators such as collaboration with other healthcare professionals can be promoted to improve the experiences and, ultimately, the care for patients and their families.