直立不耐受患儿生活质量及影响因素研究

Quality of Life of Children with Orthostatic Intolerance and Its Influencing Factors

目的描述直立不耐受患儿生活质量现状,并分析其影响因素,为提高患儿生活质量的干预措施提供理论依据。方法纳入74例直立不耐受患儿作为病例组,74例与患儿人口统计学资料相匹配的健康儿童作为对照组,采用直立不耐受症状严重程度评分表、特质应对方式问卷、家庭关怀度指数问卷以及儿少主观生活质量问卷等工具,对两组儿童及家长进行调查与访谈。结果直立不耐受患儿总体满意度:16.2%(12例)为不太满意及以下,52.7%(39例)为一般满意,31.1%(23例)为比较满意及以上,与对照组比较差异有统计学意义(Z=-3.375,P=0.001);且总体满意度得分为(62.39±14.82)分,显著低于对照组儿童(72.49±17.31)分(t=-3.811,P<0.01)。单因素及多元回归分析表明,患儿的疾病严重程度、应对方式、父亲的教养方式与家庭功能总分等是其生活质量总体满意度的影响因素。结论直立不耐受患儿生活质量低于健康儿童,受疾病、自身特点和家庭因素的影响。医护人员应关注直立不耐受患儿的生活质量。

Objective To study the quality of life（QOL） of children with Orthostatic Intolerance（OI） and analyze the influencing factors,in order to provide a theoretical basis for improving the interventional measures of children′s QOL.Methods Seventy-four children diagnosed as having OI and seventy-four healthy children were assigned as OI group and control group respectively,the demographic parameters of the children in the two groups were matched.A questionnaire survey was conducted among these children and their parents,including Orthostatic Intolerance Symptomatic Severity Questionnaire,Trait Coping Style Questionnaire（TCSQ）,Family APGAR Index,and Inventory of Subjective Life Quality for Children and Adolescent（ISLQ）.Results For general satisfaction of QOL in OI children,16.2%（12） were under normal level,52.7%（39） at normal level and 31.1%（23） above normal level,which was significantly different from that of control group（Z=-3.375,P=0.001）;and the average score in OI children was（62.39±14.82） which was significantly lower than that in healthy children（72.49±17.31）（t=-3.811,P0.01）.The univariate and multivariate logistic regression analysis showed that QOL of OI children was influenced by the severity of disease,coping style,father′s parenting style and the total score of family functioning.Conclusion QOL of OI children is lower than healthy children,and influenced by the disease,children′s characteristics and family factors.