Frequency of social burden and underage children in neuro-oncological patients

Abstract

Abstract Objective Brain tumours can cause significant burden for patients and their families, including physical, psychological, and social challenges. This burden can be particularly difficult for patients with malignant brain tumours and those with underage children. However, the frequency of social burden among neuro-oncological patients and the proportion of patients with underaged children is currently unknown. The aim of this retrospective study is to determine the frequency of social and family dysfunction among neuro-oncological patients, the percentage of such patients who have underage children, and to assess their associated burden. Methods During a 22-month period, all outpatient brain tumour patients were asked to complete a short questionnaire that included epidemiological data, the EORTC-qlq-C30 and -BN20 questionnaire, and the distress thermometer. Data were collected and analysed using Prism 9 for macOS (Version 9, GraphPad Prism). Results Our analysis included 881 brain tumour patients, of which 540 were female. Median age was 61 years (ranging from 16 – 88 years). Of all patients, 228 suffered from malignant intracranial tumours. More than half of all patients and more than 65 % of patients with malignant tumours reported that their illness or medical treatment interfered with their social activities and family life. Almost 30 % of patients reported moderate or severe complaints. About 27 % of all patients (and 31 % of patients with malignancies) expressed moderate or major concerns that their family life could be disrupted. Among the patients with malignancies, 83.5 % of patients had a total of 318 children at the time of tumour diagnosis, with a mean age of 33 ± 0.9. Of these patients with malignancies, 38 (17.9 %) had a total of 56 underage children at the time of tumour diagnosis, and currently have 53 underage children. Patients with minor children had more financial worries but less interference of their disease with social activities, less psycho-oncological distress, and a more positive outlook into the future (each, p < 0.0001). They evaluated their general health status and quality of life in the week prior to their current appointment significantly better (each p < 0.0001). Conclusion Our study found that 17.9 % of patients with malignant brain tumours have underage children. However, having underage children may actually be a positive resource for these patients, as they show lower distress values and better quality of life.