Department of Neurology and Interdisciplinary Neuro-Oncology, University Hospital Tübingen, Hertie Institute for Clinical Brain Research, Eberhard-Karls-University Tübingen, Tübingen, Germany.
Center for Neuro-Oncology, Comprehensive Cancer Center Tübingen-Stuttgart, University Hospital Tübingen, Eberhard-Karls-University Tübingen, Tübingen, Germany.
Psychooncology. 2021 Sep;30(9):1502-1513. doi: 10.1002/pon.5713. Epub 2021 May 5.
The COVID-19 pandemic may reinforce psychosocial distress of neuro-oncological patients. We aimed to (1) differentiate the burden caused by the pandemic versus the tumor and (2) establish topics relevant for brain tumor patients (BTPs) and caregivers.
Patients and caregivers were prospectively assessed from April 2020-July 2020 by a 10-item comprising interview over the phone, including qualitative and quantitative questions. They were quantitatively evaluated i.a. by the distress thermometer (DT, score 1-10). The qualitative questions were analyzed using structured content analysis: The interview questions defined the main categories. Subcategories were derived by an inductive approach assessing the frequency of patients' and caregivers' answers.
A total of 69 patients and 20 caregivers were interviewed; n = 36 were female (49%), mean age was 53 years (range 32-81). Patients' disease-related DT scores were higher than the COVID-19-related DT scores: the median of the disease-related DT score was 7 (range 2-10) versus median of COVID-19-related distress: 5.0 (range 2-7). Caregivers perceived a higher burden due to the disease (DT median disease: 8; range 2-10 vs. DT pandemic: 3, range 0-10). A total of five main and 21 subcategories were elaborated, most frequently mentioned were "restrictions in public and private affairs" (28%), "changes in the psychological well-being" (23%), "limited social interaction by contact restriction" (25%). Subcategories relevant for caregivers were similar to those of BTPs.
A considerable proportion of patients and caregivers still perceived the brain tumor disease as more burdensome than the pandemic. We established main and subcategories of interview items possibly of great relevance to patients during these difficult times, which could be implemented in the content-related adaption of the psychosocial assessment.
新冠疫情可能会加重神经肿瘤患者的心理社会困扰。我们旨在：（1）区分疫情和肿瘤带来的负担；（2）确定与脑肿瘤患者（BTP）和照护者相关的主题。
2020 年 4 月至 7 月期间，通过电话访谈前瞻性评估患者和照护者，访谈包括 10 个项目，包含定性和定量问题。他们通过焦虑自评量表（DT，1-10 分）等进行定量评估。定性问题采用结构化内容分析进行分析：访谈问题定义了主要类别。通过评估患者和照护者回答的频率，采用归纳法衍生出亚类。
共访谈了 69 名患者和 20 名照护者；n=36 名女性（49%），平均年龄 53 岁（32-81 岁）。患者疾病相关 DT 评分高于新冠相关 DT 评分：疾病相关 DT 评分中位数为 7（2-10），新冠相关焦虑评分中位数为 5.0（2-7）。照护者认为疾病带来的负担更大（DT 疾病评分中位数：8；范围 2-10 vs. DT 大流行：3，范围 0-10）。共总结出 5 个主要类别和 21 个亚类，最常提到的是“公共和私人事务受限”（28%）、“心理健康变化”（23%）、“接触限制导致社交互动有限”（25%）。与 BTP 相似，照护者亚类也与患者相关。
相当一部分患者和照护者仍认为脑肿瘤疾病比疫情更具负担。我们确定了访谈项目的主要和亚类，这些项目在困难时期可能对患者非常重要，可以纳入社会心理评估的内容调整中。
