癫痫患儿疾病家庭负担的现状及影响因素研究

Current status and influencing factors of family burden of epilepsy children

目的 了解癫痫患儿疾病家庭负担的现状及影响因素,为促进癫痫患儿的合理管理、减轻癫痫患儿疾病家庭负担提供依据。方法 采用方便抽样法,选取2021年1—12月于西安市儿童医院神经内科住院部治疗的315名癫痫患儿的父母作为研究对象。采用自制一般资料调查表、孕产期情况调查表、疾病相关信息调查表及疾病家庭负担量表(FBS)调查癫痫患儿及其父母的一般资料、孕产期情况、疾病情况及家庭负担现状。采用多重线性回归分析癫痫患儿疾病家庭负担的影响因素。结果 315名癫痫患儿父母的FBS总分为(17.95±11.36)分,家庭经济负担维度的标准化得分为1.0(0.8,1.6)分,70.48%(222/315)的癫痫患儿家庭经济负担为中度及以上。多重线性回归分析结果显示,父亲职业、家庭年收入、户外活动频率、有无合并症、发作频率、多药治疗是癫痫患儿疾病家庭负担的影响因素(P<0.05)。结论 癫痫患儿疾病家庭负担中,经济负担最重,为中等以上。父亲职业不稳定、家庭年收入低、有癫痫共患病、户外活动频率低、发作未得到有效控制、多种药物治疗的癫痫患儿家庭,需要得到更多的关注。

Objective To understand the current situation and influencing factors of the family burden of epilepsy in children,and to provide a basis for promoting reasonable management of epilepsy in children and reducing the family burden of epilepsy in children.Methods Parents of 315 epileptic children who were hospitalized in the Department of Neurology of Xi'an Children's Hospital from January to December 2021 were selected as the research subjects by the convenient sampling method.A self-designed general questionnaire,maternal pregnancy and childbirth situation questionnaire,disease related information questionnaire and Family Burden Scale(FBS)were applied to investigate the general information,maternal situation,disease situation and family burden status of children with epilepsy.Multiple linear regression analysis was applied to analyze the influencing factors of family burden of epilepsy in children.Results The total FBS score was(17.95±11.36),and the standardized score of family financial burden dimension was 1.0(0.8,1.6).The financial burden of 70.48%(222/315)of families of children with epilepsy was at a moderate or higher level.The results of multiple linear regression analysis showed that the occupation of the father,annual family income,frequency of outdoor activities,epilepsy comorbidities,frequency of seizures and multidrug therapy were all influencing factors of family burden(P<0.05).Conclusions Among the families with epilepsy,the economic burden is the heaviest,with a moderate or higher level.Families of children with epilepsy with unstable father occupation,low family annual income,comorbidities of epilepsy,low frequency of outdoor activities,seizures not effectively controlled,and multiple drug treatment need more attention.