神经肿瘤患者中社会负担和未成年子女的频率。
Frequency of social burden and underage children in neuro-oncological patients.
发表日期:2023 Sep 07
作者:
Marcel A Kamp, Christiane von Sass, Donjetë Januzi, Maxine Dibué, Katharina Libourius, Anna C Lawson McLean, Peter Baumgarten, Aaron Lawson McLean, Nazife Dinc, Christian A Senft
来源:
Brain Structure & Function
摘要:
脑瘤对患者及其家庭造成了重大负担,包括身体、心理和社交方面的挑战。这种负担对患有恶性脑瘤和有未成年子女的患者尤其困难。然而,神经肿瘤患者中社交负担的频率以及有未成年子女的患者比例目前尚不清楚。本回顾性研究的目的是确定神经肿瘤患者中社交和家庭功能障碍的频率,以及这类患者中具有未成年子女的比例,并评估相关负担。
在22个月的期间内,要求所有脑瘤患者完成一份包括流行病学数据、EORTC-QLQ-C30和-BN20问卷以及痛苦温度计的简短问卷。数据采用Prism 9 for macOS(版本9,GraphPad Prism)进行收集和分析。
我们的分析包括881例脑瘤患者,其中540例为女性。中位年龄为61岁(范围为16至88岁)。所有患者中,228例患有恶性颅内肿瘤。超过一半的患者和65%以上的恶性肿瘤患者报告称,他们的疾病或医疗治疗干扰了他们的社交活动和家庭生活。近30%的患者报告了中度或严重的不适。约27%的所有患者(以及31%的恶性肿瘤患者)表达了中度或重大的担忧,认为他们的家庭生活可能会受到破坏。在恶性肿瘤患者中,83.5%的患者在肿瘤诊断时共有318个子女,平均年龄为33 ± 0.9岁。在这些恶性肿瘤患者中,有38人(17.9%)在肿瘤诊断时共有56个未成年子女,目前有53个未成年子女。有未成年子女的患者更担心经济问题,但疾病对社交活动的干扰较少,心理肿瘤病理困扰较轻,并对未来持更积极的态度(各项p值小于0.0001)。在当前预约之前的一周内,他们对自己的整体健康状况和生活质量评价显著更好(各项p值小于0.0001)。
我们的研究发现,17.9%的恶性脑瘤患者有未成年子女。然而,拥有未成年子女对这些患者实际上可能是一个积极的资源,因为他们表现出更低的困扰值和更好的生活质量。© 2023. 作者。
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.During a 22-month period, all 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).Our analysis included 881 brain tumour patients, of which 540 were female. Median age was 61 years (ranging from 16 to 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).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.© 2023. The Author(s).