Division of Hematology/Oncology, Department of Pediatrics, Children's Hospital of Eastern Ontario, 401 Smyth, Ottawa, Ontario, Canada K1H 8L1.
Cancer. 2010 Mar 15;116(6):1602-7. doi: 10.1002/cncr.24888.
We prospectively compared the proxy reporting of health-related quality of life (HRQL) by parents and nurses of children with Hodgkin disease to see how well they correlated with the children's report.
Children with all stages of Hodgkin disease, their parents, and the clinic nurse were all asked to complete 4 different HRQL measures at 4 time points: 2 weeks after the first course of chemotherapy, on the third day of the second course of chemotherapy, during the third week of radiation, and 1 year after diagnosis.
Fifty-one patients from 12 centers across Canada were enrolled in the study between May 1, 2002 and March 31, 2005. Two patients were excluded. The children's Pediatric Quality of Life Inventory (PedsQL) generic scores increased from 64 at base line to 81 at the end of the study. There was substantial agreement (intraclass correlation coefficient >0.6) among the participants' scores at most time points except when the child was actively receiving inpatient chemotherapy. At that time, there was only fair to moderate agreement between the child and parent, with the parents on average rating the PedsQL generic score 5 points lower than the child. The nurses still had substantial agreement at that time point with the PedsQL generic and cancer module as well as the EuroQol EQ-5D visual analogue scale visual analogue scale.
Over the course of treatment for Hodgkin disease, there was substantial agreement among the parent's, nurse's, and children's reported HRQL scores. Nurses contribute valuable additional information as proxy respondents.
我们前瞻性地比较了父母和护士对霍奇金病患儿健康相关生活质量（HRQL）的代理报告，以了解它们与患儿报告的相关性如何。
所有阶段的霍奇金病患儿、其父母和诊所护士均被要求在 4 个时间点完成 4 种不同的 HRQL 测量：化疗第 1 疗程后 2 周、第 2 疗程第 3 天、放疗第 3 周和诊断后 1 年。
2002 年 5 月 1 日至 2005 年 3 月 31 日期间，加拿大 12 个中心的 51 名患者入组研究，其中 2 名患者被排除。患儿的儿科生活质量问卷（PedsQL）一般评分从基线时的 64 分增加到研究结束时的 81 分。除患儿接受住院化疗时外，大多数时间点的参与者评分均具有高度一致性（组内相关系数>0.6）。在这段时间里，患儿和家长之间的一致性只有中等偏下，家长平均给 PedsQL 一般评分低 5 分。在患儿接受住院化疗时，护士与 PedsQL 一般评分、癌症模块以及 EuroQol EQ-5D 视觉模拟量表仍具有高度一致性。
在霍奇金病治疗过程中，父母、护士和患儿报告的 HRQL 评分之间具有高度一致性。护士作为代理受访者提供了有价值的额外信息。
