Department of Psychology, University Kiel, Kiel, Germany.
Department of Neurology & Interdisciplinary Neuro-Oncology, Hertie Institute for Clinical Brain Research, University Hospital Tuebingen, Tuebingen, Germany.
Psychooncology. 2020 Dec;29(12):2057-2066. doi: 10.1002/pon.5564. Epub 2020 Oct 16.
Generic psychosocial screening tools may not reflect the unique symptom profile of brain tumour patients (BTPs). The aim was to adapt the problem list of the distress thermometer (DT) for BTPs.
First, items of low relevance for BTPs were identified on basis of retrospective analyses. Second, relevant yet missing problems were identified via an extensive literature search, qualitative interviews with BTPs and experts, as well as an online expert survey. The resulting raw version of the adapted problem list in BTPs was subsequently pretested.
In the first part, data of n = 657 BTPs were analysed. Twelve items (20%) were excluded in this step as they proved to be less relevant for BTPs (i.e., items were endorsed by less than 10% and without significant correlations to patients' DT score). In the second part, qualitative interviews and the online survey with 102 professionals led to the addition of 21 new and the modification and condensation of 17 relevant problems specific for BTPs. This adapted list was than successfully pretested in n = 19 patients, leading to the 'distress thermometer brain tumour problem list' (DT-BT), consisting of 42 relevant problems.
The adapted problem list for the DT particularly reflects the neurological and psychosocial burden of an intracranial tumour and allows for the targeted assessment of the specific burdens and needs of BTPs. Our revised version of the DTs problem list (DT-BT) should in the next step be widely validated in multinational samples.
通用的心理社会筛查工具可能无法反映脑肿瘤患者（BTP）的独特症状特征。本研究旨在为 BTP 改编痛苦温度计（DT）的问题清单。
首先，基于回顾性分析确定与 BTP 低相关的项目。其次，通过广泛的文献检索、与 BTP 和专家的定性访谈以及在线专家调查，确定相关但缺失的问题。由此产生的 BTP 适应问题清单的原始版本随后进行了预测试。
在第一部分，分析了 n = 657 名 BTP 的数据。在这一步骤中，有 12 个项目（20%）被排除在外，因为它们与 BTP 的相关性较低（即，不到 10%的患者对这些项目表示认可，且与患者的 DT 评分无显著相关性）。在第二部分，对 102 名专业人员进行的定性访谈和在线调查，增加了 21 个新的、特定于 BTP 的相关问题，并对 17 个相关问题进行了修改和浓缩。随后，在 n = 19 名患者中成功地对该改编清单进行了预测试，得出了包含 42 个相关问题的“痛苦温度计脑肿瘤问题清单”（DT-BT）。
改编后的 DT 问题清单特别反映了颅内肿瘤的神经和心理社会负担，能够有针对性地评估 BTP 的特定负担和需求。我们对 DT 问题清单（DT-BT）的修订版本应在下一步在跨国样本中广泛验证。
