Seekatz Bettina, Lukasczik Matthias, Löhr Mario, Ehrmann Katja, Schuler Michael, Keßler Almuth F, Neuderth Silke, Ernestus Ralf-Ingo, van Oorschot Birgitt
Interdisciplinary Center for Palliative Medicine, University Hospital Würzburg, Würzburg, Germany.
Department of Medical Psychology, Medical Sociology and Rehabilitation Sciences, University of Würzburg, Würzburg, Germany.
Support Care Cancer. 2017 Sep;25(9):2761-2770. doi: 10.1007/s00520-017-3687-7. Epub 2017 Mar 29.
Patients with brain tumors have a high symptom burden and multiple supportive needs. Needs of caregivers are often unattended. This study aims to determine screening-based symptom burden and supportive needs of patients and caregivers with regard to the use of specialized palliative care (SPC).
Seventy-nine patients with glioblastoma and brain metastases and 46 caregivers were screened with standardized questionnaires following diagnosis and 2 months later. The screening assessed symptom burden, quality of life (QoL), distress, and supportive needs.
The most relevant symptoms were drowsiness, tiredness, and low well-being (53-58%). The most prevalent patient supportive needs were the need for information about available resources, the illness, and possible lifestyle changes (50-56%). The most prevalent caregiver needs were information about the illness, lifestyle changes, and about available resources (56-74%). Patients who received SCP and their caregivers had higher symptom burden and supportive needs than those without SPC. They reported moderate improvement in pain, distress, and QoL, while patients without SPC also improved their QoL, but had small to moderate deteriorations in pain, drowsiness, nauseas, well-being, and other problems. Distress of caregivers with SPC improved with moderate to large effect sizes but still was on a high level and remained stable for those without SPC.
Symptom burden and supportive needs were high, but even more caregivers than patients expressed high distress and supportive needs. SPC appears to reach the target group, both patients and caregivers with elevated symptom burden. Targeted interventions are needed to improve tiredness and drowsiness.
脑肿瘤患者症状负担重，有多种支持需求。照顾者的需求常常无人关注。本研究旨在确定基于筛查的脑肿瘤患者及其照顾者在使用专科姑息治疗（SPC）方面的症状负担和支持需求。
79例胶质母细胞瘤和脑转移瘤患者及其46名照顾者在诊断后及2个月后接受标准化问卷调查。筛查评估了症状负担、生活质量（QoL）、痛苦程度和支持需求。
最相关的症状是嗜睡、疲倦和幸福感低（53%-58%）。患者最普遍的支持需求是了解可用资源、病情以及可能的生活方式改变（50%-56%）。照顾者最普遍的需求是了解病情、生活方式改变和可用资源（56%-74%）。接受SCP的患者及其照顾者比未接受SPC的患者症状负担和支持需求更高。他们报告疼痛、痛苦和生活质量有中度改善，而未接受SPC的患者生活质量也有所改善，但在疼痛、嗜睡、恶心、幸福感和其他问题上有轻度至中度恶化。接受SPC的照顾者的痛苦有中度至较大程度的改善，但仍处于较高水平，未接受SPC的照顾者的痛苦程度保持稳定。
症状负担和支持需求较高，但表达高度痛苦和支持需求的照顾者甚至比患者更多。SPC似乎覆盖了目标群体，即症状负担较重的患者及其照顾者。需要有针对性的干预措施来改善疲倦和嗜睡。
