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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 understand the expenditures of health care services for children with autism during their medical treatment and rehabilitation and to understand the family disease burden of children with autism and to provide a theoretical basis for better rehabilitation services for children with autism. Methods Totally 236 children were enrolled in the Children’s Developmental Behavior Research Center of Harbin Medical University and received rehabilitation training. The questionnaire and Family Disease Burden Scale (FBS) questionnaire were used to investigate the status quo of autistic children’s rehabilitation and health service utilization. , Including the general situation of children and families, the annual economic income of the family and the total cost of medical treatment and rehabilitation, and the family burden caused by the disease. Results The average annual cost of treatment for children with autism was 14,800 yuan. Among the families of children with rehabilitation, the average annual expenditure on treating more than 20,000 yuan was 36.6% in urban areas, 48.4% in rural areas and higher in rural areas than in urban areas. The average expenditure on outpatient visits and rehabilitation was 76.2% of the total family income, accounting for 52.2% of the total family expenditure. Rehabilitation treatment costs of all respondents are at their own expense. 83.5% of the families believed that the treatment and treatment had a great impact on the family economy. The burden of family disease shows that the average factor scores of the three dimensions of family financial burden, daily activities and recreational activities are greater than one. The positive rates of family illness burden, financial burden, recreational activities and physical fitness of all four groups were all higher than 50%. Conclusions Expenditure on rehabilitation of children with autism has undergone tremendous pressure on their family economy. Using effective policy support and assistance to improve the autism rehabilitation service system is an effective way to alleviate the burden on family children and improve the current predicament.