gms | German Medical Science

Objective: Neurooncological diseases cause physical, psychological, social and possibly also spiritual distress according to the Total Pain Concept. Neurooncologists and palliative care specialists should ideally address all four areas. In practice, neurooncological treatment focuses on physical, and sometimes psychological burden. However, social difficulties can have a massive impact on patients and relatives and their quality of life. The aim of the present work was to determine the importance of social stress for neurooncological patients in a pilot study

Methods: Neurooncological patients were routinely asked to answer a battery of different questionnaires including epidemiological data, the EORTC-qlq-C30 and -BN20 questionnaire, the distress-thermometer, and a modified variant of a palliative-care screening tool (MIDOS). The Likert scale of the EORTC were dichotomized into a “favourable” (no or minor burden) or “unfavourable” (major or severe burden) quality of life. All patients treated in our neurooncologic outpatients office between 02/2021 and 11/2021 were included in the present analysis. Data were collected and analysed using the Prism 9 for macOS (Version 9, GraphPad Prism). Data are presented as means ± standard error of mean.

Results: The present analysis includes data from 1061 consultations and 643 patients encompassing the entire range of benign and malign neurooncological diseases. Mean age was 58 ± 0.6 years. 105 patients (16.3 %) stated that they lived alone, 121 (19 %) had no steady partner and 55 patients (8.5 %) said they had neither a steady partner nor children or other relatives.

Median distress was 5 (0 – 10). Neurooncological disease significantly affected everyday family life in 32 %, activities with relatives or friends in 29 % and in 50 % the overall quality of life within the last week. About 30 % of patients worried about the future or their family life. These findings were independent from tumour diagnosis (malignant vs. benign), life-expectancy, relationship status, living situation, children, and especially underaged children on the quality-of-life items.

Conclusion: Social stress is a significant problem in about 30 % of neuro-oncological patients. In our observation, this finding was independent from tumour diagnosis, life-expectancy and social situation. Future studies might specifically address social burden and develop concepts to explicitly support neuro-oncological patients and their families.