SF-36量表评估Fabry病患者生活质量的研究

Surveying quality of life in patients with Fabry disease by the SF-36 scale

目的调查中国Fabry病患者生存质量（quality of life，QOL），分析其可能的影响因素，探讨健康调查简表（SF-36量表）的适用性。方法2003年1月～2013年1月上海交通大学医学院附属瑞金医院肾内科收治的57例Fabry病患者为病例组，50例健康人群为对照组。应用SF-36量表评估Fabry病患者生存质量，比较病例组与健康人群组间QOL的差异，多元线性回归法分析影响Fabry病患者QOL的相关因素。结果（1）病例组和对照组组间的8个维度得分的差异有统计学意义（均P〈0．05），说明其反应度高；病例组总量表的Cronbach’s仅系数为0．934，各维度间Pearson相关系数均低于Cronbach＇sd系数，因子分析产生的2个公因子的负荷与理论假设大致一样，说明其结构效度较为理想；病例组的可接受性在100％，证明此量表适用于该患者群。（2）男性患者在生理职能（role．physical，RP）、躯体疼痛（bodilypain，BP）2个维度得分明显低于女性患者（Pc0．01），说明男性患者比女性患者的生活质量差；合并血管角质瘤组的患者在生理功能（physicalfunction，PF）和精神健康（mentalhealth，MH）2个维度分数低于未合并患者组（Pc0．05），说明临床症状明显的患者身心压力更大，更易有抑郁倾向。（3）将年龄、性别和临床类型纳入回归方程的多元线性逐步回归分析结果提示，影响Fabry病患者生存质量的主要因素是年龄。结论SF-36量表适用于评估Fabry病患者生活质量的研究，Fabry病患者的生活质量（尤其精神方面）应加以关注及管理。

Objective To test the availability of the SF-36 scale for the Chinese patient with Fabry disease （FD）, the quality of life（QOL） and its probable influence factors were analyzed. Methods The data were obtained from 50 healthy volunteers and 57 patients with FD enrolled in nephrology department of Ruijin hospital from Jan, 2003 to Jan, 2013. The SF-36 scale was used to evaluate the QOL of patients and to compare the difference between the patients and controls. Furthermore, the influencing factors were estimated by multiple linear regressions. Results Between the patients and controls, the differences of 8 dimensionalitiy＇s scores had statistical significance, which claimed that the reaction was sensitive. Especially, in the patient group, the Pearson correlation coefficient among each domain of the SF-36 was lower than its Cronbaeh＇s c~ coefficient （0.934）, which indicated good internal consistency reliability. The two common factors were much the same to the theory assume, which illustrated the construct validity was available. Even the acceptability of the