Abstract: 【Objective】 To acknowledge the health care status and demands of children born with birth defects. 【Methods】 Between July 2007 and September 2008, 453 live born cases of birth defects were diagnosed and registered by the Beijing Birth Defects Monitoring network-a hospital based birth defects registry system. Their parents were called to assess their survival status from birth up to the age of 6~8 months. 【Results】 The proportions of 315 live born infants with birth defects inhabited in Beijing, Expanded Program of Immunization, and physical examination were 94.00%, 93.40% respectively. The proportions of having been to the hospital once at least, not having been to the hospital, not acknowledging the fact of infants' birth defects were 70.70%, 27.10%, and 2.20% respectively. 【Conclusions】 The medical services were not enough for the demands of children born with birth defects. To establish registry system of children born with birth defects, to accomplish the net of diagnosis, therapy and transport of children born with birth defect will provide more services to the children born with birth defects.

Key words: birth defects, health care status, health care demands

摘要： 【目的】 了解出生缺陷患儿保健状况及其家长对相关儿童保健的需求。 【方法】 对2007年7月—2008年9月分娩且家长均居住在北京市海淀区的453例活产出生缺陷患儿,分娩6～8个月时通过电话调查方式询问出生缺陷患儿家长。 【结果】 315例在北京市生活的儿童接受计划免疫接种率94.00%、体检率93.40%;70.70%“到医院复诊过至少1次”,27.10%“未到医院复查”,2.20%“家长否认孩子有出生缺陷”。 【结论】 目前的医疗保健机构不能满足出生缺陷患儿医疗保健需求;建立有效的出生缺陷患儿信息登记系统对于患儿信息的长期随访至关重要;完善出生缺陷患儿诊断、治疗、转诊网络,为患儿提供更好的后续服务。

关键词: 出生缺陷, 保健状况, 保健需求