黑龙江省孤独症谱系障碍儿童家庭经济负担现状

了解黑龙江省孤独症谱系障碍(autism spectrum disorder,ASD)儿童在就诊及康复治疗过程中的卫生费用支出情况及对家庭造成的经济负担,为相关部门制定帮扶政策提供依据.方法 采用自拟调查问卷对黑龙江省5个地市12所康复机构的314名ASD儿童的主要抚养人进行调查和访谈.结果 黑龙江省ASD儿童年均康复治疗总费用为6.44万,其中城镇为6.38万元,农村为6.53万元,差异无统计学意义(P>0.05).农村患儿交通膳食费用、房屋租住费用均高于城镇患儿(P值均<0.05).ASD儿童康复治疗总费用占家庭收入的平均比例为193.7%,其中城镇为173.9%,农村为219.6%,农村明显高于城镇(Z=-3.250,P<0.01).无论城乡,康复训练、交通膳食2项支出占收入(85.1%,98.2%;54.4%,79.9%)和支出(33.0%,32.4%;21.5%,26.7%)比例最大,其次为房屋租住、就诊和药物治疗.调查对象中有118名(37.6%)享受惠民补助.结论 ASD儿童康复治疗费用给患儿家庭造成严重的经济负担.应该进一步扩大本地区惠民补助的覆盖率、提高救助金额,最大限度减轻ASD患儿所带来的经济负担和精神压力.

A cross-sectional study on financial burden in families of children with autism spectrum disorder in Heilongjiang Province

Objective To examine the expenditure on health care and treatment among families of children with autism spectrum disorder (ASD) in Heilongjiang Province.Methods The self-designed questionnaire "Status of Autistic Children Rehabilitation and Health Service Utilization" was used to investigate the financial cost in families of ASD children.Caregivers of 314 ASD children were recruited from twelve rehabilitation institutions from five cities in Heilongjiang Province.Results The total cost of rehabilitation for children with ASD in Heilongjiang province was 64.4 thousand Yuan per year,accounting for 193.7% of the total household income and 68.6% of the total household expenditure.Regardless of urban and rural areas,rehabilitation and transportation accounted for the largest share of both income and expenditure,followed by housing rental,consulting and medical treatment.In the survey,118(37.6%) ASD children benefited from the government financial assistance.A total of 81.5% of families considered the total cost of rehabilitation treatment being a major determinant to the family economic hardship.Conclusion The cost of rehabilitation of ASD children has caused a serious financial burden on their families.It is necessary to expand the coverage of benefiting ASD further to minimize the disease burden and mental stress on their families.