gms | German Medical Science

Objective: Neuro-oncological diseases are associated with psychosocial burden, which might be reinforced by the COVID-19 pandemic. We aimed to determine 1) burden caused by the pandemic and disaese, 2) how patients and caregivers cope with the situation, 3) we established items relevant for patients and caregivers in this situation.

Methods: Patients and caregivers were prospectively assessed (04-06/2020) by a 10-item encompassing interview over the phone after given informed consent. The qualitative questions were evaluated using Kuckartz’s [1] structured content analysis to find relevant items and main/subcategories.

Results: A total of 69 patients and 20 caregivers were interviewed, n= 36 of the patients were female (49%). Mean age of the patients was 53y (range 32-81). Most patients had the diagnosis of a glioblastoma (31%), the mean KPS was 85%. Patients’ mean score on the Distress Thermometer (DT) was 4 (range 0-9; SD= 2.9), n=22 (32%) scored >/=6 showing relevant distress. A total of 25 (36%) had no additional burden due to the pandemic. Main inductive determined categories were 1) “changes in the past four weeks”, 2) “burden by the pandemic”, 3) “coping strategies” and 4) “requests to the hospital”. 21 subcategories were derived deductively from the interviews with the patients, most frequently mentioned were “restrictions in public and private affairs” (28%), “changes in the psychological well-being” (23%) “social interaction by contact restriction” (25%). Main coping strategies were “changes in personal attitude” (58%), and “adaption of behavior to the current situation” (39%). A total of 18 subcategories relevant for caregivers were identified, similar to those of the patients. Regarding burden due to disease vs. pandemic, caregivers perceived a higher burden due to the disease (tumor: DT score 7.5; range 2-10, SD=2.2 vs. pandemic: DT score 3.7 (range 0-10, SD= 3.1). A relevant request to the hospital were telephone consultations instead of face-to-face-contact.

Conclusion: During the pandemic, the needs profile of brain tumor patients is still unique. During COVID-19 pandemic, adaption of the psychosocial assessment is required (e.g., electronic assessment, adaption of questionnaires). We provide main and subcategories covering burden by disease itself but also by the pandemic and focusing on coping strategies and resources, which might be useful in clinical routine.