朗格尔汉斯细胞组织细胞增多症患儿生存质量影响因素的调查分析

The level and influence factors of health-related quality of life in children with langerhans cell histiocytosis

目的探讨朗格尔汉斯细胞组织细胞增多症(Langerhans Cell Histiocytosis,LCH)患儿的生存质量及其影响因素。方法采用儿童生存质量普适性核心量表(PedsQL4.0)对就诊于北京儿童医院血液中心的74例LCH患儿进行调查。结果 5～7岁患儿在生理功能、心理社会功能和总功能的得分最低。生理功能的影响因素是体重满意程度,社会功能的影响因素是体重满意程度和在京居住;学校功能的影响因素是性别,总功能的影响因素是体重满意程度。自身体重满意者在总功能领域最高(P<0.05),在生理功能领域得分高于认为自己"胖"的患儿(P<0.05),在社会功能领域得分高于认为自己"瘦"的患儿(P<0.05)。结论LCH患儿的生活质量值得关注。

Objective To investigate the level and influence factors of health-related quality of life（HRQOL） in children with langerhans cell histiocytosis（LCH）.Methods Seventy-four LCH children admitted by Beijing Children＇s hospital were investigated with Pediatric Quality of Life Inventory（PedsQL4.0）.Results Children aged at 5~7 years old had the lowest scores regarding physical functioning,psychosocial functioning and total functioning.The influence factor of HRQOL in physical functioning was satisfaction with body weight,the influence factor of HRQOL in emotional functioning was single child,the influence factors of HRQOL in social functioning were satisfaction with body weight and whether living in Beijing,the influence factor of HRQOL in school functioning was gender,the influence factor of HRQOL in total score was satisfaction with body weight.HRQOL in children who were satisfied with their body weight was significantly higher than that of children who thought they were too fat regarding physical functioning（P0.05）,and higher than that of children who thought they were two thin regarding social functioning（P0.05）,and higher than that of children who thought they were too fat or too thin regarding total functioning（P0.05）.Conclusion Nurses should pay more attention to LCH children and their quality life.