肝豆状核变性患者生存质量与社会支持状况及其相关分析

目的探讨肝豆状核变性（hepatolenticulardegeneration，HLD）患者生存质量与社会支持状况及其相关性。方法采用社会支持量表（socialsupport ringscale，SSRS）和生存质量测定量表（WHOqualityoflifescale，WHOQOL一100）对30例HLD患者和30例健康人（对照组）进行问卷调查。了解HLD患者生存质量与社会支持状况及其相关性。结果HLD组患者生存质量总分（273．60±15．24）分明显低于对照组健康人群（345．53±2．70）分，各维度得分均明显低于对照组，两组比较，差异具有统计学意义（均P〈0．01）；社会支持总分（35．73±1．72）明显低于对照组健康人群（45．50±1．68）分，各维度得分均明显低于对照组，两组比较，差异具有统计学意义（均P〈0．01）；HLD患者生存质量总分及各维度与社会支持总分及各维度呈正相关（均P〈0．01或P〈0．05）。结论HLD患者生存质量及社会支持明显低于健康人群，其生存质量与社会支持呈正相关，即得到的社会支持越多生存质量越好。

Correlation between the life quality and social supports in patients with hepatolenticular degeneration

Objective To investigate the correlation between the life quality and social supports in patients with hepatolenticulardegeneration（HLD）. Methods The Social Support Seale （ SSRS） and the Quality of Life Scale （ WHOQOL-100） were used for the investigation among 30 HLD patients as HLD group and 30 healthy people as the control group so as to study the correlation between the quality of life of HLD patients and the social supports. Results The total score on the quality of life in HLD group was significantly lower than that of the control group （273.60 ±15.24 vs. 345.53 ± 2.70, P 〈 0.01）, so it was with all the items of the qualily of life scale. The total score on the social supports of the HLD group was significantly lower than the control group （35.73 ± 1.72 vs. 45.50± 1.68, P 〈 0.01）, so it was with all the items of the social supports （all P 〈 0.01）. The total score on the quality of life together with the items was positively correlated with that of the total score on the social support （P 〈 0.01 or P 〈 0.05）. Conclusions The quality of life and social support for the HLD patients is significantly lower than those for healthy people. Their quality of life is positively related with the social supports, which means the more social support they get, the better their quality of life is.