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摘要:
目的 了解血友病患儿关节健康状况与其生活质量(quality of life, QoL)的相关性。 方法 选取2009年11月至2011年5月在北京协和医院血友病门诊确诊为血友病的68例男性患儿，年龄4~18岁。采用中文版血友病关节健康评估表(hemophilia joint health score，HJHS)2.1及中文版儿童QoL测定量表(the pediatric quality of life inventory measurement models, PedsQL)4.0分别评价血友病患儿的关节健康状况和QoL，相关性研究应用Pearson相关分析方法进行。 结果 血友病患儿PedsQL4.0评分为(1.84±0.78)分, HJHS2.1评分为(22.82±13.09)分, 两者呈正相关(P＜0.05, Pearson系数为0.527)。PedsQL4.0总分及生理功能项评分与HJHS2.1中关节肿胀、关节周围肌肉状况、关节活动度、关节摩擦音、关节疼痛及步态评分均呈正相关(P＜0.05)，其中PedsQL4.0总分与关节活动度、关节周围肌肉状况及步态评分的相关性较高，Pearson系数分别为0.477, 0.465, 0.377。 结论 关节健康状况变坏对血友病患儿QoL有不良影响，关节周围肌肉状况、关节活动度和步态是主要因素。 Abstract:Objective To investigate the relationship between quality of life(QoL) and joint health in children with hemophilia. Methods We selected 68 cases of boys with hemophilia from 4 to 18 years old who were diagnosed in the hemophilia clinic in Peking Union Medical College Hospital from November 2009 to May 2011. Joint physical structure and function were measured using the Hemophilia Joint Health Score(HJHS) version 2.1 in Chinese, and QoL was measured using the Pediatric Quality of Life Inventory Measurement Models(PedsQL)version 4.0 in Chinese. Pearson Correlation analysis was used to determine correlation. Results The score of PedsQL4.0 was 1.84±0.78 in these patients, and the score of HJHS2.1 was 22.82±13.09, with a significantly positive correlation between the two scores(P < 0.05, Pearson coefficients=0.527). The joint swelling, muscle strength around joints, range of motion, crepitus upon motion, joint pain and global gait score in HJHS2.1 were all directly correlated with PedsQL 4.0 total score and its physical function score(all P < 0.05), in which there were stronger correlation in joint range of motion, muscle strength around joints and global gait, with Pearson coefficients of 0.477, 0.465, and 0.377, respectively. Conclusions Bad joint health is correlated with poorer QoL of children with hemophilia. Joint range of motion, muscle strength around the joints, and gait are the major factors affecting QoL. -
Key words:
- hemophilic children /
- joint health /
- quality of life
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表 1 血友病患儿PedsQL4.0和HJHS2.1分项评分结果
项目 评分 PedsQL 1.84±0.78 生理功能 2.16±0.95 情感功能 1.43±0.99 社交功能 1.41±0.90 学校表现 2.20±0.84 HJHS 22.82±13.09 肿胀情况 4.63±3.07 肌肉情况 5.22±4.22 关节活动度 6.15±4.97 摩擦音 2.47±1.63 关节疼痛 1.26±1.53 总体步态 2.97±1.67 PedsQL:儿童生活质量测定量表；HJHS:血友病关节健康评估表 
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表 2 血友病患儿PedsQL4. 0与HJHS2.1评分间的Pearson分析结果[r值(P值)]
HJHS评分 PedsQL4.0 生理功能 情感功能 社交功能 学校表现 HJHS 0.527(0.000) 0.620(0.000) 0.272(0.025) 0.421(0.002) 0.394(0.001) 肿胀情况 0.330(0.006) 0.380(0.001) - - - 肌肉情况 0.465(0.000) 0.592(0.000) - - - 关节活动度 0.477(0.000) 0.522(0.000) - - - 摩擦音 0.281(0.020) 0.347(0.004) - - - 关节疼痛 0.250(0.040) 0.353(0.003) - - - 总体步态 0.377(0.002) 0.410(0.001) - - - PedsQL、HJHS:同表 1
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