孤独症患儿236名家庭疾病负担状况调查  

Survey on Disease Burden of Families Among 236 Autism Children

作　　者：王佳[1] 于聪[1] 孙彩虹[1] 夏薇[1] 梁爽[1] 武丽杰[1] 

机构地区：[1]哈尔滨医科大学公共卫生学院儿少卫生与妇幼保健学教研室,黑龙江150081

出　　处：《中国学校卫生》2010年第2期138-140,共3页Chinese Journal of School Health

摘　　要：目的了解孤独症患儿在就诊及康复治疗过程中的卫生服务费用支出情况,掌握孤独症患儿的家庭疾病负担,为更好地开展孤独症患儿康复服务工作提供理论依据。方法收集哈尔滨医科大学儿童发育行为研究中心咨询并接受康复训练的患儿236例,采用自拟"孤独症儿童康复及卫生服务利用现状"调查问卷及家庭疾病负担量表(FBS)进行调查,包括患儿及家庭的一般情况、家庭的年经济收入及就诊及康复治疗的总费用支出情况、疾病导致的家庭负担情况。结果孤独症患儿家庭平均年治疗费用支出为1.48万元;进行康复治疗的患儿家庭中,平均年治疗消费支出超过2万以上的城镇占36.6%,农村占48.4%,农村高于城镇。患儿就诊及康复治疗总费用支出占其家庭总收入的比例平均为76.2%,占其家庭总支出的平均比例为52.2%。全部调查对象的康复治疗费用均为自费支出。83.5%的患儿家庭认为就诊及治疗对家庭经济有很大影响。家庭疾病负担结果显示,家庭经济负担、日常活动和娱乐活动3个维度平均因子分都大于1。家庭疾病负担总分、经济负担、娱乐活动和成员躯体健康4个维度的阳性回答率均高于50%。结论孤独症患儿康复治疗的开支使其家庭经济承受了巨大压力;利用有效的政策支持和扶助,完善孤独症康复服务体系,是缓解患儿家庭负担、改善目前困境的有效方法。Objective To know of expenses for seeing a doctor and rehabilitation training to autistic children, to find out the disease burden of patient families, and to provide theoretical bases for rehabilitation service. Methods 236 cases who accepted consultation and rehabilitation training were recruited from Children Development and Behavior Research Center of Harbin Medical University. The Status of Rehabilitation and Health Service Utilization for Autism Children and Family Burden Scale { FBS） were used, including general status of patients and families （demographic, economic and culture factors） , annual economic income of patients families and expenses for seeing a doctor and rehabilitation training for autistic children, and family economic burden. Results The mean of annual expenses for autism treatment was 14.8 thousands yuan. The towns counted for 36.6% in which average annual expense for the patients with rehabilitation treatment was more than 20 thousands yuan, and the countries counted for 48.4%. The average ratio of health service expenses in total family income counted for 76.2% and 52.2% in total family expenses. The rehabilitation expenses for all respondents were cost by their own. About 83.5% patient families considered that seeing a doctor and treatment greatly affected the family economy. The resuhs of family disease burden showed that the positive response rates were more than 50% in four dimensions, i.e. family disease burden, economic burden, recreation activities and physical health of family members. Conclusion Autistic children family economy bears great pressure for patient＇s rehabilitation and treatment. In order to improve their actual difficulties, relieve the family burden, we should make use of effective policy supports and make health service system better.

关 键 词：孤独性障碍 疾病 患病代价 费用 医疗 儿童 

分 类 号：R179[医药卫生—妇幼卫生保健] R395.6[医药卫生—公共卫生与预防医学]