A survey of Childhood Cancer Patients and Caregivers Experience during COVID – UROP Spring Symposium 2021

A survey of Childhood Cancer Patients and Caregivers Experience during COVID

Maria Murillo


Pronouns: She/her

Research Mentor(s): Rama Jasty, Associate Clinical Professor
Research Mentor School/College/Department: Pediatrics, Michigan Medicine
Presentation Date: Thursday, April 22, 2021
Session: Session 6 (4pm-4:50pm)
Breakout Room: Room 10
Presenter: 6

Event Link


BACKGROUND The COVID-19 pandemic led to unprecedented change in healthcare delivery. In pediatric oncology, patients and providers were challenged to adapt to evolving circumstances while balancing adherence to well-established oncology treatment and monitoring plans in order to decrease exposure and prevent serious infections in this potentially immunosuppressed population. These changes may have affected healthcare behaviors. OBJECTIVE To evaluate the impact of the first 4 months of the COVID-19 pandemic on the timing of oncologic care and the overall experiences of pediatric oncology patients and families. DESIGN/METHODS Caregivers of patients aged under 18 or patients over 18 seen for active treatment or follow-up in the oncology clinic between January 1, 2019 and June 30, 2020 were eligible to participate. An anonymous, encrypted electronic survey was created and distributed. Responses were collected from July to December 2020. RESULTS There were 78 partial or complete responses to the survey. Of these, 24 were on active therapy with 8.4% reporting delay in therapy. About 17.9% of respondents reported a delay in getting surveillance scans. About 24.2% reported a delay in scheduled appointments. No patients surveyed chose to delay treatments against the provider’s recommendations. About 15.9% used our electronic medical record platform to send messages, and 59.4% had video visits with positive feedback overall. Only 5% of participants reported difficulty getting in touch with the oncology team. Nearly a quarter (22.4%) of participants endorsed fear about going to the emergency department for care. About 89.7% of responders felt the institution’s visitor policy helped keep them safe, and 93.2% felt it helped keep others safe. About 17.6% families reported exposure to COVID-19, and 10.3% indicated a household member had symptoms or diagnosis of COVID-19. Of college students, 36.4% planned to defer classes. Over a third of households (35.8%) had someone stop working due to the risk of exposure. The majority of participants reported using a government website as their source for information about COVID-19, but participants relied more on their healthcare providers for cancer-specific information. The majority of participants reported following the appropriate guidelines for mask-wearing and social distancing during the pandemic. CONCLUSION Adherence to therapy and access to the oncology team was largely maintained. Given the frequency of interruptions to education and/or work, screening for social stressors and increased social work involvement is warranted. Continuing education for providers with up-to-date information is critical as patients rely predominantly on their healthcare providers for cancer-specific recommendations related to COVID-19.

Authors: Rama Jasty-Rao, Sandra Ngo, Laura Sedig, Maria Murillo, Elizabeth Stuchell, Amy Edmonds, Ian Wolfe, Sung Won Choi, Rajen Mody, Rama Jasty-Rao
Research Method: Survey Research

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