Affronti Mary Lou, Randazzo Dina, Lipp Eric S, Peters Katherine B, Herndon Susan C, Woodring Sarah, Healy Patrick, Cone Christina K, Herndon James E, Schneider Susan M
Semin Oncol Nurs. 2018 Dec;34(5):472-485. doi: 10.1016/j.soncn.2018.10.006. Epub 2018 Nov 6.
To describe the adaptability to the patterns in symptoms and quality of life (QoL) during 6 months post low-grade glioma diagnosis by valid and reliable tools; to identify through qualitative interviews patient/provider adaptive techniques and strategies; and to assess associations among patient characteristics, symptoms and QoL, and adaptive techniques or strategies.
Demographic, clinical and pathologic data from medical records. Validated instruments that assess QoL, fatigue, depression, and distress were completed at 2, 4, and 6 months post diagnosis. Qualitative interviews identifying the symptoms, challenges, adaptive techniques and strategies were conducted at 4 and 6 months.
The most frequently used adaptive strategies included: obtaining community support (87%), managing expectations (73%) and support systems (67%), and seeking out knowledge about physical (67%) and behavioral symptoms (53%). Seizures were reported with IDH1 (11%) but not IDH1. Patients with either IDH1 or TERT consistently reported lower QoL and higher distress, depression, and fatigue scores. IDH1/TERT may be related to lower QoL because of IDH1-related seizures.
Findings provide a list of adaptive strategies and characteristics to address the problems and symptoms that may improve overall QoL in patients with low-grade glioma.
通过有效且可靠的工具描述低级别胶质瘤诊断后6个月内患者症状模式及生活质量(QoL)的适应性;通过定性访谈确定患者/医护人员的适应技术和策略;评估患者特征、症状与生活质量以及适应技术或策略之间的关联。
病历中的人口统计学、临床和病理数据。在诊断后2个月、4个月和6个月完成评估生活质量、疲劳、抑郁和痛苦的经过验证的工具。在4个月和6个月进行定性访谈,以确定症状、挑战、适应技术和策略。
最常用的适应策略包括:获得社区支持(87%)、管理期望(73%)和支持系统(67%),以及寻求有关身体症状(67%)和行为症状(53%)的知识。报告有IDH1突变(11%)的患者出现癫痫发作,但IDH1未突变的患者未出现。携带IDH1或TERT突变的患者一致报告生活质量较低,痛苦、抑郁和疲劳得分较高。IDH1/TERT突变可能因与IDH1相关的癫痫发作而导致生活质量较低。
研究结果提供了一系列适应策略和特征,以解决可能改善低级别胶质瘤患者总体生活质量的问题和症状。