The brain tumor not-for-profit and charity experience of COVID-19: reacting and adjusting to an unprecedented global pandemic in the 21st century

Christina Amidei; Jean Arzbaecher; Mary Ellen Maher; Christine Mungoshi; Rosemary Cashman; Stuart Farrimond; Carol Kruchko; Chris Tse; Maureen Daniels; Sharon Lamb; Anita Granero; Mary Lovely; Jenifer Baker; Sally Payne; Kathy Oliver

doi:10.1093/noajnl/vdaa166

The brain tumor not-for-profit and charity experience of COVID-19: reacting and adjusting to an unprecedented global pandemic in the 21st century

Neurooncol Adv. 2020 Dec 7;3(1):vdaa166. doi: 10.1093/noajnl/vdaa166. eCollection 2021 Jan-Dec.

Authors

Christina Amidei¹, Jean Arzbaecher², Mary Ellen Maher³, Christine Mungoshi⁴, Rosemary Cashman⁵, Stuart Farrimond⁶, Carol Kruchko⁷, Chris Tse⁶, Maureen Daniels⁸, Sharon Lamb⁶, Anita Granero⁹, Mary Lovely¹⁰, Jenifer Baker⁶, Sally Payne⁶, Kathy Oliver⁶

Affiliations

¹ Department of Neurological Surgery, Feinberg School of Medicine, Northwestern Medicine, Chicago, Illinois, USA.
² Brain Tumor Center, Department of Neurology and Rehabilitation, University of Illinois, Chicago, Illinois, USA.
³ Lou and Jean Malnati Brain Tumor Institute, Robert H Lurie Comprehensive Cancer Center, Feinberg School of Medicine, Northwestern Medicine, Chicago, Illinois, USA.
⁴ Zimbabwe Brain Tumour Association, Harare, Zimbabwe.
⁵ BC Cancer Agency, Vancouver, British Columbia, Canada.
⁶ International Brain Tumour Alliance (IBTA), Tadworth, UK.
⁷ Central Brain Tumor Registry of the United States (CBTRUS), Hinsdale, Illinois, USA.
⁸ The Gerry & Nancy Pencer Brain Tumour Centre, Princess Margaret Cancer Centre, University Health Network, Toronto, Canada.
⁹ Oscar's Angels, Toulouse, France and Rome, Italy.
¹⁰ National Brain Tumor Society, Newton, Massachusetts, USA.

Abstract

Background: The Coronavirus Disease 2019 (COVID-19) pandemic has affected individuals as well as disease-specific brain tumor organizations. These organizations around the world exist to address unmet needs for patients and caregivers they serve. The direct impact of the pandemic on these organizations constitutes significant collateral damage. In order to better understand the effects of the COVID-19 pandemic on brain tumor organizations, the International Brain Tumour Alliance (IBTA) carried out an international survey to identify organizational changes induced by the virus and approaches adopted to address challenges.

Methods: A 37-question online survey consisting of categorical and qualitative questions was developed and circulated to 130 brain tumor organizations across the world. Seventy-seven organizations from 22 countries completed the survey (59% return rate). Descriptive statistics and content analysis were used to present the results.

Results: Responses fell into the following 3 categories: (1) organizational characteristics, (2) impact of COVID-19 on services, and (3) COVID-19 impact on financial and human resources within organizations. Although organizational characteristics varied, common concerns reported were activity disruption which impacted organizations' abilities to offer usual services and challenges to sustaining funding. Both financial and human resources were stressed, but integral adaptations were made by organizations to preserve resources during the pandemic.

Conclusions: Although brain tumor organizations have been impacted by the COVID-19 pandemic, organizations quickly adjusted to this unprecedented global healthcare crisis. Nimble reactions and flexibility have been vital to organization sustainability. Innovative approaches are required to ensure organizations remain viable so that needs of brain tumor community at large are met.

Keywords: COVID-19; brain tumor organization; support services.