In April and May 2020, the IBTA, as part of its work with the Society for Neuro-Oncology (SNO) COVID-19 Task Force carried out the first international survey within the global community of brain tumour patients and caregivers on how the COVID-19 pandemic had directly affected them. The survey results have now been published in Neuro-Oncology Advances. In total, 1,989 participants completed the survey from 33 countries including 1,459 patients and 530 caregivers.
Among the findings, the survey found that while this pandemic has been an extremely stressful time for this population, caregivers were significantly more anxious than patients.
Furthermore, from those polled, respondents in the Americas were found to have been most likely to have lost their jobs, practiced self-isolation, and received telehealth services. When asked to rank the most trusted sources of information during the pandemic, healthcare providers, brain tumour charities, and not-for-profits were the most trusted.
The results serve as a rich resource of data and personal testimonials to help individuals and organisations in the brain tumour community to ensure they continue to fulfil patients’ expectations and retain patients’ trust by providing accessible, high-quality care, information, and support.
Lead author, neurosurgeon Dr Mathew Voisin (Toronto, Canada) said: “Among the wealth of information collected through the survey, the results revealed that because of COVID-19, brain tumour patients and caregivers experienced a significant amount of stress and anxiety.”
The paper’s co-authors include the IBTA’s Chair Kathy Oliver, Dr Gelareh Zadeh, Tess Chee and IBTA Senior Advisors: Dr Stuart Farrimond, Jean Arzbaecher, Carol Kruchko, Mary Ellen Maher, Chris Tse, Rosemary Cashman, Maureen Daniels, Christine Mungoshi, Sharon Lamb, Anita Granero, Dr Mary Lovely, Jenifer Baker and Sally Payne. Read the full article online here (free access to the PDF).
UPDATE 29th October 2020: A lay (plain language) summary of the survey's findings (right) has now been published and can be downloaded here.