Philip Jennifer, Collins Anna, Staker Jane, Murphy Michael
Department of Medicine, University of Melbourne, Parkville, Australia.
Palliative Care Service, St Vincent's Hospital Melbourne, Australia.
Neurooncol Pract. 2019 Jan;6(1):61-70. doi: 10.1093/nop/npy010. Epub 2018 May 19.
There is limited evidence to guide best approaches to supportive care delivery to patients with high-grade glioma. I-CoPE (nformation, ordination, reparation and motional) is a structured supportive care approach for people with newly diagnosed high-grade glioma and their family carers. Delivered by a cancer care coordinator, I-CoPE consists of (1) staged information, (2) regular screening for needs, (3) communication and coordination, and (4) family carer engagement. This pilot study tested acceptability and preliminary effectiveness of I-CoPE, delivered over 3 transitions in the illness course, for people newly diagnosed with high-grade glioma and their carers.
I-CoPE was delivered at the identified transition times (at diagnosis, following the diagnostic hospitalization, following radiotherapy), with associated data collection (enrollment, 2 weeks, 12 weeks). Outcomes of interest included: acceptability/feasibility (primary); quality of life; needs for support; disease-related information needs; and carer preparedness to care (secondary). Descriptive statistics were used to assess acceptability outcomes, while patient and carer outcomes were assessed using repeated measures ANOVA.
Thirty-two patients (53% male, mean age 60) and 31 carers (42% male) participated. I-CoPE was highly acceptable: 86% of eligible patients enrolled, and of these 88% completed the study. Following I-CoPE patients and carers reported fewer information needs ( .001), while carers reported fewer unmet supportive care needs ( .01) and increased preparedness to care ( = .04). Quality of life did not significantly change.
A model of supportive care delivered based upon illness transitions is feasible, acceptable, and suggests preliminary efficacy in some areas. Formal randomized studies are now required.
对于为高级别胶质瘤患者提供支持性护理的最佳方法,可供参考的证据有限。I-CoPE(信息、规划、修复和情感支持)是一种针对新诊断的高级别胶质瘤患者及其家庭护理人员的结构化支持性护理方法。由癌症护理协调员提供,I-CoPE包括:(1)分阶段提供信息;(2)定期筛查需求;(3)沟通与协调;(4)让家庭护理人员参与。这项试点研究测试了I-CoPE在疾病过程中的3个过渡阶段为新诊断的高级别胶质瘤患者及其护理人员提供服务时的可接受性和初步有效性。
在确定的过渡时间(诊断时、诊断性住院后、放疗后)提供I-CoPE,并进行相关数据收集(入组时、2周、12周)。感兴趣的结果包括:可接受性/可行性(主要指标);生活质量;支持需求;疾病相关信息需求;以及护理人员的护理准备情况(次要指标)。描述性统计用于评估可接受性结果,而患者和护理人员的结果则使用重复测量方差分析进行评估。
32名患者(男性占53%,平均年龄60岁)和31名护理人员(男性占42%)参与了研究。I-CoPE的可接受性很高:86%符合条件的患者入组,其中88%完成了研究。接受I-CoPE后,患者和护理人员报告的信息需求减少(P<0.001),而护理人员报告的未满足的支持性护理需求减少(P<0.01),护理准备情况有所改善(P = 0.04)。生活质量没有显著变化。
基于疾病过渡阶段提供支持性护理的模式是可行的、可接受的,并且在某些方面显示出初步疗效。现在需要进行正式的随机研究。