Savage E, Riordan A O, Hughes M
Catherine McAuley School of Nursing and Midwifery, Brookfield Health Science Complex, University College Cork, Cork, Ireland.
Eur J Oncol Nurs. 2009 Feb;13(1):36-48. doi: 10.1016/j.ejon.2008.09.001. Epub 2008 Nov 18.
Quality of life (QOL) in children with acute lymphoblastic leukaemia (ALL) is now considered an important outcome measure of treatment for this disease. The aim of this paper is to systematically review studies on QOL in children during treatment for ALL with consideration to methodological details and quality of studies, empirical findings on QOL as reported by children and parents, and whether children and parents differ in their reports on QOL. Searches were conducted in biomedical, psychological and behavioural science databases. Six papers met inclusion criteria for review: 4 cross-sectional studies and 2 qualitative studies. There was little consistency in how QOL was measured or qualitatively assessed across studies. The quality of most studies was limited by small sample sizes and cross-sectional designs. Children's reports on QOL were represented in 3 studies and discrepancies were found between children's and parent's accounts of QOL. There is a need for ongoing research on QOL in children with ALL that use longitudinal designs, large sample sizes, and child reports of QOL. There is a need for theoretical development of the concept of QOL through concept analysis, grounded theory research and empirical validation of developing theory of QOL. Theoretical development of the concept of QOL will contribute to greater clarification of what is meant by QOL than currently exists which in turn has the potential to advance the methodology of measuring this concept in children.
急性淋巴细胞白血病（ALL）患儿的生活质量（QOL）如今被视为该疾病治疗的一项重要疗效指标。本文旨在系统回顾有关ALL患儿治疗期间生活质量的研究，内容涵盖研究方法细节与质量、患儿及家长报告的生活质量实证研究结果，以及患儿与家长在生活质量报告方面是否存在差异。我们在生物医学、心理学和行为科学数据库中进行了检索。有6篇论文符合纳入综述的标准：4篇横断面研究和2篇定性研究。各研究在生活质量的测量方法或定性评估方面几乎没有一致性。大多数研究的质量受样本量小和横断面设计的限制。3项研究呈现了患儿对生活质量的报告，且发现患儿与家长对生活质量的描述存在差异。需要对ALL患儿的生活质量进行持续研究，采用纵向设计、大样本量，并获取患儿对生活质量的报告。需要通过概念分析、扎根理论研究以及对生活质量发展理论的实证验证，对生活质量概念进行理论发展。生活质量概念的理论发展将有助于比目前更清晰地阐明生活质量的含义，进而有可能推进测量儿童这一概念的方法。
