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

Background The Coronavirus Disease 2019 (COVID-19) pandemic has affected individuals as well as disease-specific brain tumour organisations. These organisations around the world exist to address unmet needs for patients and caregivers they serve. The direct impact of the pandemic on these organisations constitutes significant collateral damage. In order to better understand effects of the COVID-19 pandemic on brain tumour organisations, the International Brain Tumour Alliance (IBTA) carried out an international survey to identify organisational 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 tumour organisations across the world. Seventy-seven organisations from 22 countries completed the survey (59% return rate). Descriptive statistics and content analysis were used to present results. Results Responses fell into three categories: 1) organisational characteristics, 2) impact of COVID-19 on services, and 3) COVID-19 impact on financial and human resources within organisations. Although organisational characteristics varied, common concerns reported were activity disruption which impacted organisations’ abilities to offer usual services and challenges to sustaining funding. Both financial and human resources were stressed, but integral adaptations were made by organisations to preserve resources during the pandemic. Conclusions Although brain tumour organisations have been impacted by the COVID-19 pandemic, organisations quickly adjusted to this unprecedented global healthcare crisis. Nimble reactions and flexibility have been vital to organization sustainability. Innovative approaches are required to ensure organisations remain viable so that needs of brain tumour community at large are met.