重庆市孤独症谱系障碍患儿诊治的家庭相关因素调查

Family related factors in diagnosis and treatment of autism spectrum disorder in Chongqing

目的初步了解孤独症谱系障碍(autism spectrum disorder,ASD)患儿的家庭基本信息、医疗负担及需求信息,为更好地完善ASD医疗体系、促进对ASD患儿家庭的社会支持提供建议。方法 2015年3月—2017年5月在重庆市多家特殊训练机构选取接受训练的205例确诊ASD患儿,进行家庭环境基础信息问卷调查,收集ASD患儿家庭基本信息、患儿出生情况以及患儿基本医疗负担及需求信息。结果参与调查的ASD患儿205例,其中男童180例,女童25例,男女性别比例为7. 2∶1;初次诊断年龄主要集中在24～35月龄,母亲文化水平、婚姻状况、是否为独生子女、家庭结构及家庭关系为初次诊断年龄的影响因素。58. 0%的ASD儿童在确诊0. 5年内开始正规治疗,家庭关系是干预时间长短的影响因素。结论 ASD儿童的早期诊断、治疗,一方面决策层需要加大政府支持力度,增加宣传疾病筛查、防治知识,加强高危儿童筛查,建立完善针对ASD患儿稳定的、有效的康复网络;另一方面还需要社会、社区力量加入,对有ASD儿童的家庭给予包括物质、精神方面的支持。

Objective To investigate the status of family, disease burden and patient demand for autism spectrum disorder (ASD) children, and to make a proposal for improving health care system and society supporting for the families with autism children. Methods Totally 205 children with ASD in specific educational institutions of Chongqing were enrolled in this study from March 2015 to May 2017.The information about the family information, perinatal history, disease burden, and patient demand was collected by using questionnaires. Results Totally 205 children with ASD were enrolled in this study with the male to female ratio of 7.2∶ 1(180/25). The main initial diagnostic age of the children with ASD was 24 ~ 35 months. The degree of mother received education, marital status, number of children (single-child or not), family structure and family relationships affected the initial diagnostic age. About 58.0% of the children with ASD received formal treatment within 6 months from the initial diagnosis to autism diagnosis. Further, family relationship is a factor influencing the length of intervention. Conclusion For early diagnosis and treatment, decision makers need to increase government support, increase publicity of disease screening and prevention knowledge, strengthen screening for high-risk children, and establish a stable and effective rehabilitation network for autistic children. Social and community forces are also needed to support families with ASD children, both materially and spiritually.