摘要
目的通过评估和描述急性淋巴细胞白血病(acute lymphoblastic leukemia,ALL)患儿的生活质量状况,比较患儿自评和家长代评结果的差异。方法选择2010年10月—2011年11月在上海某3级甲等儿童专科医院住院的ALL患儿及其家长共52例,采用儿科生活质量测定量表体系(The Pediatric Quality of Life Inventory Measurement Models,PedsQLTM)中的PedsQLTM4.0儿童生活质量普适性核心量表和PedsQLTM3.0儿童癌症模块生活质量量表进行自我评估和家长评估。结果家长报告在生活质量总体得分上与儿童自评一致(P>0.05)。但患儿在生理、情感方面以及对于"操作性焦虑"及"担心"上得分高于家长的评分(P<0.05);而在"学校方面"和"认知方面"低于家长报告(P<0.05)。结论患儿和家长对生活质量总体评价间不存在显著差异,当患儿自评存在困难时,家长代评具有一定的参考价值。但作为独立的个体,患儿和家长所得出的生活质量可能存在部分偏差,因此在临床工作中,应充分结合患儿和家长两者的汇报,以提供更全面、更优质、更个性化的护理。
Objective To assess and describe the quality of life in children with acute lymphoblastic leukemia （ALL） , and to compare the difference in assessment between child self-report and parent proxy-report on The Pediatric Quality of Life Inventory Measurement Models （PedsQLTU）. Methods The Chinese Version of PedsQLTM 4.0 Generic Core Scale and PedsQLTM 3.0 Cancer Module provided multidimensional information a- bout the quality of life in children with cancer. 52 children with ALL aged 5 to 7 years old in a tertiary children＇ s hospital and their parents were surveyed from October 2010 to November 2011. Results There were no sig- nificant differences in the scores of quality of life between child self-report and parent proxy-report （ P 〉 0.05 ）. But the children had more distress and burden on physical function, emotional function, procedural anxiety and worry than their parents （ P 〈 0.05 ）, and they had less distress and burden on school function and cognitive problems than their parents （P 〈 0.05 ）. Conclusion There was no significant difference in the overall assess- ment of quality of life between child self-report and parent proxy-report. So when children have difficulty in self- report, parents could provide important information. However, the differences in subscales remind the medical staff considering both child self-report and parent proxy-report during chemotherapy so as to provide high-quality and individual nursing care in symptom management.
出处
《上海护理》
2013年第1期18-21,共4页
Shanghai Nursing
关键词
儿科
急性淋巴细胞白血病
生活质量
自评
家长代评
Pediatrics
Acute lymphoblastic leukemia
Quality of life
Self-report
Parent proxy-report
