Panepinto Julie A
Department of Pediatric Hematology/Oncology/Bone Marrow Transplant, Medical College of Wisconsin, Children's Research Institute of the Children's Hospital of Wisconsin, Milwaukee, Wisconsin, USA.
Pediatr Blood Cancer. 2008 Jul;51(1):5-9. doi: 10.1002/pbc.21557.
Advances in drug therapy, hematopoietic stem cell transplantation, and technology have improved the morbidity and survival for those with sickle cell disease. The effect of this modern therapy on the health-related quality of life (HRQL) of those with sickle cell disease is not known. HRQL provides an assessment of how an illness, its complications, and its treatment are experienced by a patient. This review will examine prior work in HRQL in sickle cell disease and the rationale for utilizing HRQL as an outcome to measure impact of treatment. In addition, issues to consider when reporting HRQL will be presented.
药物治疗、造血干细胞移植和技术方面的进展改善了镰状细胞病患者的发病率和生存率。目前尚不清楚这种现代疗法对镰状细胞病患者健康相关生活质量（HRQL）的影响。健康相关生活质量评估的是患者如何体验疾病、其并发症及其治疗。本综述将审视此前在镰状细胞病健康相关生活质量方面的研究工作，以及将健康相关生活质量作为衡量治疗效果的一项指标的基本原理。此外，还将介绍报告健康相关生活质量时需要考虑的问题。
