Health-related Quality of Life in Children and Adolescents With Sickle Cell Disease
Health-related Quality of Life in Children and Adolescents With Sickle Cell Disease
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DOI：
10.1016/j.pedhc.2009.12.006
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发表时间：
2011-07-01
影响因子：
2.8
通讯作者：
Buchanan, George R.
中科院分区：
文献类型：
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作者：
Dale, Juanita Conkin;Cochran, Cindy J.;Buchanan, George R.
目的：为了评估儿童和青少年镰状细胞病（SCD）的健康相关生活质量（HRQOL），设计，设置和参与者：PedsQL 4.0通用量表，一个多维的自我报告工具，已被证明是有效的和可靠的用于儿童和青少年慢性疾病，包括23个项目，评估身体，情感，社会和学校的功能。对124名患有SCD（100名镰状细胞性贫血，24名镰状β零型地中海贫血）的儿童和青少年（年龄8至18岁，儿童自我报告）及其父母（父母代理报告）进行了问卷调查。将儿童和父母的总体HRQOL和心理健康评分的总分以及身体、情感、社会和学校功能的子量表得分与健康儿童的已发表数据进行比较。SCD儿童的总分和分量表得分也与他们的父母进行了比较。结果：SCD儿童及其父母的总体HRQOL和HRQOL的所有子领域均低于健康儿童及其父母（P < .001）。SCD儿童评定自己的HRQOL显着优于他们的父母没有整体HRQOL和所有的子域（P <0.001），情绪functioning除外（P = 0.06）。结论：SCD儿童和他们的父母认为整体HRQOL和所有HRQOL子域是低于健康儿童的分数。因此，改善HRQOL的成功治疗可能代表SCD儿童健康的重要进展。《儿科卫生保健杂志》（2011）25，208-215中描述的。
Objective: To assess health-related quality of life (HRQOL) in children and adolescents with sickle cell disease (SCD).Design, Setting, and Participants: The PedsQL 4.0 Generic Scales, a multidimensional self-report instrument that has been shown to be valid and reliable for use in children and adolescents with chronic illness, consists of 23 items that assess physical, emotional, social, and school functioning. Questionnaires were administered to 124 children and adolescents (ages 8 to 18 years, child self-report) with SCD (100 sickle cell anemia, 24 sickle beta zero thalassemia) and their parents (parent-proxy report). Summary scores for children's and parents' ratings of overall HRQOL and psychosocial health and subscale scores for physical, emotional, social, and school functioning were compared with published data for healthy children. Both summary and subscale scores for children with SCD also were compared with those of their parents.Results: Children with SCD and their parents rated overall HRQOL and all subdomains of HRQOL lower than did healthy children and their parents (P < .001). Children with SCD rated their own HRQOL significantly better than their parents did for overall HRQOL and all subdomains (P < .001) except emotional functioning (P = .06).Conclusions: Children with SCD and their parents perceived overall HRQOL and all HRQOL subdomains to be lower than scores reported in healthy children. Therefore, successful therapeutic efforts to improve HRQOL could represent important advances in the health of children with SCD. J Pediatr Health Care. (2011) 25, 208-215.