安徽省苯丙酮尿症患儿监护人生活质量与社会支持典型相关分析

Canonical Correlation Analysis of the Quality of Life with Social Support Status among Parents with a Phenylketonuria(PKU) Child in Anhui Province

目的了解安徽省苯丙酮尿症(phenylketonuria,PKU)患儿监护人的生活质量和社会支持现况及其相关性。方法采用生活质量综合评定量表(generic quality of life inventory-74,GQOLI-74)和社会支持评定量表(social support rating scale,SSRS)对选定人群进行生活质量和社会支持的调查及典型相关分析。结果共调查175人,安徽省PKU患儿监护人生活质量和社会支持得分分别是(53.34±8.13)分和(35.2±7.7)分,生活质量水平低于一般人群(P<0.05)。社会支持与生活质量之间存在典型相关关系(F=7.15,P<0.001)。反映生活质量的第一典型变量V1主要由物质生活和心理功能决定,反映社会支持的第一典型变量W1主要由主观支持决定。结论 PKU患儿监护人生活质量较一般人群差,社会支持水平低。监护人获得的主观支持越多,则其心理健康状况越好,越少或越低,则由社会因素所造成的职能限制越大。

Objective To learn the quality of life and social support status and their relationship among parents with a phenylketonuria（PKU） child in Anhui Province. Methods Generic quality of life inventory -74 （GQOLI -74 ）and Social Sup-port Rating Scale（SSRS） were applied to study the quality of life and social support status among parents with a PKU child, and canonical correlation analysis was performed. Results A total of 175 parents with a PKU child were investigated,and the total scores of quality of life and social support were 53.34±8. 13 and 35.2±7.7. The life quality of parents with a PKU child was lower than normal population. Canonical correlation was found between social support and quality of life among parents with a PKU child（ F = 7.15, P 〈 0. 001 ）. Moreover, the typical variable V1, which could reflect the quality of life, was mainly deter-mined by material life and mental function, and the typical variable W1 for the social support, was mainly determined by subjective support. Conclusion The life quality of parents with a PKU child was lower than normal population, with the social support status staying at a low level. Overall, the better mental health of the parents with a PKU child is closely associated with subjective support, and inversely with the restriction of social factors.