摘要
目的研究贵州医科大学附属医院地中海贫血患儿及其家属的疾病家庭负担情况。方法应用疾病家庭负担量表(family burden scale of disease,FBS)及基本情况调查表(basic situation questionnaire)对2016年12月至2018年4月期间在贵州医科大学附属医院儿童血液肿瘤科诊治的符合研究要求的0～14岁114例地中海贫血患儿家属进行调查。结果地中海贫血患儿家属的FBS总分为(21.53±7.89)分,各维度标准化得分由高到低依次为家庭经济负担(1.389±0.330)分、家庭娱乐活动(0.914±0.530)分、家庭关系(0.807±0.530)分、家庭成员心理健康(0.680±0.570)分、家庭日常活动(0.679±0.390)分、家庭成员躯体健康(0.442±0.440)。单因素分析,t/F检验显示地中海贫血患儿诊断分型、铁过载、医保情况、家庭月收入是影响FBS的主要因素(P<0.05);多元线性回归分析显示诊断分型、医保情况、家庭月收入对FBS的影响差异有统计学意义(P<0.05)。结论地中海贫血患儿的疾病家庭负担普遍存在,应根据家庭负担的状况及其影响因素采取应对措施。
Objective To study the family burden of children with thalassemia and their family members in Guizhou province. Methods Family burden scale of disease (FBS)and basic situation questionnaire were used to investigate 114 family members of children with thalassemia aged 0~14 who were diagnosed and treated in the Department of Pediatric Hematology and Oncology,Affiliated Hospital of Guizhou Medical University,from December 2016 to April 2018.Results The total score of FBS of family members of children with thalassemia was (21.53±7.89). The standardization scores of each dimension from high to low were family economic burden (1.389±0.330),family entertainment activities (0.914±0.530),family relationship (0.807±0.530),mental health of family members (0.680±0.570),daily activities of the family (0.679±0.390)and physical fitness of family members (0.442±0.440). Univariate analysis,t/F test showed that the diagnosis typing of children with thalassemia,iron overload,medical insurance and monthly family income were the main factors affecting FBS (P<0.05). Multivariate linear regression analysis showed that the effect of diagnostic typing,medical insurance,and monthly family income on FBS was statistically significant (P<0.05). Conclusion The family burden of children with thalassemia is widespread. It’s time that effective measures should be take to slove the problem according to family burden situation and its influencing factors.
作者
周楠
金皎
黄璟
吴莎莎
杨红兰
庹媛媛
李燕
ZHOU Nan;JIN Jiao;HUANG Jing(Guizhou Medical University,Guiyang 550004,China)
出处
《中国实用儿科杂志》
CSCD
北大核心
2018年第12期1004-1008,共5页
Chinese Journal of Practical Pediatrics
基金
贵阳市科技局创新团队基金(GY2015-17)
贵阳市科技局创新团队基金(GY2017-5-20)
关键词
儿童
地中海贫血
疾病家庭负担
影响因素
child
thalassemia
family burden of disease
influencing factors
