Quality of life as conveyed by pediatric patients with cancer
Quality of life as conveyed by pediatric patients with cancer
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DOI：
10.1023/b:qure.0000021697.43165.87
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发表时间：
2004-05-01
影响因子：
3.5
通讯作者：
Pui, CH
中科院分区：
文献类型：
--
作者：
Hinds, PS;Gattuso, JS;Pui, CH
生活质量仪器在测量接受癌症治疗的儿科患者的生活质量方面取得了重要进展。然而，这些工具的基础并没有包括来自患者的第一手报告；因此，这些文书在概念上可能不完整。我们直接征求儿科患者对癌症治疗期间生活质量的看法。我们进行了两项试点研究：23 名患者（8-15 岁）参与了第一项横断面研究； 13 名患者（年龄 10-18 岁）参与了第二项为期 2 年的纵向研究。使用语义内容方法对数据进行分析，两项研究的数据均识别出以下六个领域：症状、日常活动、社会/家庭互动、健康状况、情绪和生病的意义。将这些领域与七个已建立的儿科肿瘤生活质量工具进行比较，其中没有一个包含所有这六个领域；最常缺失的领域是“病态领域”的含义。在这里，我们提出了基于六个领域的儿科肿瘤患者生活质量的新定义：这一定义可以确保这些重要文书的完整性和敏感性。
Quality-of-life instruments have provided important advances in measuring the quality of life of pediatric patients receiving treatment for cancer. However, the bases of these instruments have not included first-hand reports from the patients; thus, these instruments may be conceptually incomplete. We directly solicited from pediatric patients their perspectives regarding their quality of life during treatment for cancer. We conducted two pilot studies: 23 patients (aged 8-15 years) participated in the first, a cross-sectional study; and 13 patients (aged 10-18 years) participated in the second, a 2-year longitudinal study. Data were analyzed by using a semantic-content method, and the following six domains were recognized in data from both of the studies: symptoms, usual activities, social/family interactions, health status, mood, and the meaning of being ill. These domains were compared with those of seven established pediatric oncology quality-of-life instruments, none of which included all six of these domains; the domain most frequently missing was the meaning of being ill domain. Here we present a new definition of the quality of life of pediatric oncology patients that is based on six domains; this definition may ensure the completeness and sensitivity of these important instruments.