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 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.

Brain tumors and COVID-19: the patient and caregiver experience.

BACKGROUND: Since the COVID-19 pandemic began, thousands of medical procedures and appointments have been canceled or delayed. The long-term effects of these drastic measures on brain tumor patients and caregivers are unknown. The purpose of this study is to better understand how COVID-19 has affected this vulnerable population on a global scale. METHODS: An online 79-question survey was developed by the International Brain Tumour Alliance, in conjunction with the SNO COVID-19 Task Force. The survey was sent to more than 120 brain tumor charities and not-for-profits worldwide and disseminated to pediatric and adult brain tumor patients and caregivers. Responses were collected from April to May 2020 and subdivided by patient versus caregiver and by geographical region. RESULTS: In total, 1989 participants completed the survey from 33 countries, including 1459 patients and 530 caregivers. There were no significant differences in COVID-19 testing rates (P = .662) or positive cases for brain tumor patients between regions (P = .1068). Caregivers were significantly more anxious than patients (P ≤ .0001). Patients from the Americas were most likely to have lost their jobs due to the pandemic, practiced self-isolation, and received telehealth services (P ≤ .0001). Patients from Europe experienced the most treatment delays (P = .0031). Healthcare providers, brain tumor charities, and not-for-profits were ranked as the most trusted sources of information. CONCLUSIONS: As a result of COVID-19, brain tumor patients and caregivers have experienced significant stress and anxiety. We must continue to provide accessible high-quality care, information, and support in the age of COVID-19.

A qualitative analysis of the benefits and barriers of support groups for patients with brain tumours and their caregivers.

PURPOSE: Brain tumours represent a significant burden for patients and caregivers. The aims of the present study were to explore the perceived benefits of support groups for patients and their caregivers, as well as the barriers to participation, and to generate suggestions for improvement. METHODS: Brain tumour patients and caregivers were recruited from the brain tumour centre at Princess Margaret Cancer Centre to participate in focus groups. Focus groups were audio-recorded, transcribed, and thematically analysed using qualitative methods. Eight patients (five who had attended the support groups and three who had not) and eight caregivers (all of whom attended the groups) participated in separate focus groups. RESULTS: Five major themes emerged: group cohesion (e.g., camaraderie and kinship), motivating factors to attend (e.g., loneliness), logistical factors that affected attendance (e.g., transportation), structure and content of the group (e.g., discussion topics), and suggestions for improvement (e.g., receiving personal reminders). CONCLUSIONS: This study highlights the supportive needs of brain tumour patients and their caregivers. The key findings provide helpful information on how to maximise the benefits of support groups for these populations.

Together and apart: providing psychosocial support for patients and families living with brain tumors.

PURPOSE: Brain tumors are associated with neurological sequelae and poor survival, contributing to distress in patients and their families. Our institution has conducted separate support groups for brain tumor patients and caregivers since 1999. This retrospective cohort study aimed to identify characteristics of brain tumor group participants in relation to attendance frequency, and compare themes of discussion in patient and caregiver groups. METHODS: Demographic and medical characteristics were obtained from patient and caregiver group registration sheets and medical chart review. We quantified discussion topics recorded by group facilitators between 1999 and 2006, extracted themes, and examined similarities and differences in the way these themes were expressed. RESULTS: A total of 137 patients and 238 caregivers attended the groups; about half attended more than one session. The chart review of a randomly selected subset of patient participants revealed that 57.5 % were married, 58.8 % had high-grade gliomas, and 55 % attended their first group within 3 months of diagnosis or at tumor progression. Both groups discussed physical and cognitive consequences, emotional reactions, relationships, coping, end of life, and practical issues. Caregivers discussed difficulties achieving self-care and caregiver burden. CONCLUSIONS: Brain tumor support group facilitators can expect to encounter a range of medical and psychosocial issues in accommodating patients' and caregivers' diverse concerns. Separate brain tumor patient and caregiver groups may allow participants to explore those concerns without worrying about effects on their friends or family. It remains to be seen whether the groups meet the needs of attendees, and whether those who do not attend the groups have unmet needs.