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

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.

Keywords: (brain) neoplasms; COVID-19; anxiety; caregiver burden; caregivers; communication; pandemics; perception; psycho-oncology; quality of life.

Figure 1

Anxiety scale. Columns show the anxiety level (range 0–10) reported by patients (small dotted) and caregivers (large dotted) for the tumor and COVID-19 pandemic, respectively. The exact value is reported at the side of the column.

Figure 2

Perception of Quality of Life. Rows show the distribution of Quality of Life (QoL) perception, referred to as excellent (pinpoint dot on white background), very good (diagonal line), good (horizontal lines), unsatisfactory (checkered) and not at all satisfactory (pinpoint dot on black background). At the top, patients; below, caregivers.

Figure 3

Change of future perception. The graph shows the distribution between the presence or not of modification of future perception, for patients and caregivers, respectively. The pie-chart reports the distribution among the different perception profiles, described as “more uncertain” (very dark gray), “changes, but with some positive aspects” (dark gray), “suspended” (gray), “full of fear” (light gray) and other (very light gray).

Figure 4

Sector affected by COVID-19. The graph shows the distribution of the sectors of human life affected by COVID-19 for patients. The pie-chart reports the distribution divided into social fields (very dark gray), health area (dark gray), working area (gray), psychological sphere (light gray), and economic sector (very light gray).

Figure 5

Positive suggestions for coping strategies. The graph shows the difference in the distribution of positive suggestions for improving coping strategies in the future for patients (very dark gray) and caregivers (dark gray).