Critical Issues for Patients and Caregivers in Neuro-Oncology during the COVID-19 Pandemic: What We Have Learnt from an Observational Study

TL;DR

This study explores how the pandemic impacted the mental health and care of neuro-oncology patients and their caregivers, highlighting changes in anxiety, quality of life, and treatment decisions.

Contribution

The study provides insights into the psychological and practical challenges faced by neuro-oncology patients and caregivers during the pandemic, emphasizing the need for improved patient-professional collaboration.

Findings

37.5% of patients felt at higher risk of contracting COVID-19 compared to the general population.

Caregivers reported higher anxiety scores related to both cancer and the pandemic than patients.

Despite increased care burden, 75% of patients and caregivers described their quality of life as at least good.

Abstract

Objective: The COVID-19 pandemic affected neuro-oncological patients and their caregivers regarding tumor care and emotional functioning, including Quality of Life (QoL). This study aimed to understand how COVID-19 affected their psychological state and the relations between patients and health personnel in neuro-oncology. Methods: A cross-sectional study was conducted on neuro-oncological patients and their caregivers. Results: A total of 162 patients and 66 caregivers completed the questionnaire. Altogether, 37.5% of patients perceived a greater risk of contracting COVID-19 compared to the general population. On a 0–10 scale, the patients’ tumor-related anxiety score was 5.8, and their COVID-19-related score was 4.6. The caregivers reported 7.7 and 5.5, respectively. QoL was described as at least good in 75% of both patients and caregivers; the caregivers’ care burden increased in 22.7% of cases during the pandemic, with no correlation with QoL. Future perception often changed, both in patients and caregivers. In 18% of cases, the cancer treatment schedule was changed, either by patient decision or by medical decision. However, 93.5% of patients were satisfied with their overall care. Conclusions: A considerable proportion of patients and caregivers still perceived the tumor disease as more burdensome than the pandemic, and their future as more uncertain. Such data suggest the need to build a productive alliance between patients and health professionals.

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