Cassell Cynthia, Mai Cara, Rickard Russel
North Carolina Birth Defects Monitoring Program, State Center for Health Statistics, Division of Public Health, Raleigh, North Carolina, USA.
Birth Defects Res A Clin Mol Teratol. 2007 Nov;79(11):806-10. doi: 10.1002/bdra.20413.
Regardless of where infants and children are delivered, diagnosed, or treated, an important aspect of population-based birth defects surveillance is ensuring the inclusion of children with birth defects in the catchment area. However, little is known as to how the lack of interstate birth defects data exchange affects program surveillance, monitoring, prevention, and referral activities. The study objectives were to determine the status of interstate birth defects data exchange agreements and to quantify statewide data on resident births occurring in nonresident states.
In 2004, surveys were distributed to all population-based birth defects programs in the United States to determine: 1) the types of interstate birth defects data exchange agreements that exist among birth defects programs, 2) perceived barriers in establishing exchange agreements, and 3) the extent to which out-of-state births affect a program's catchment area. The National Center for Health Statistics (NCHS) data for 2002 on live birth residency were used to determine the actual frequency of out-of-state live birth occurrence.
Of the 52 states and territories that were surveyed, 65% (n = 34) responded. Approximately 21% (n = 7) of those that responded had an interstate data exchange agreement that allowed sharing of birth defects data with another state or a facility within another state. Approximately 53% (n = 18) of responding states indicated plans to develop an interstate birth defects data exchange agreement with other states, hospitals, or both. The NCHS data showed that the actual percentage of resident out-of-state live births ranged from 0.16 to 11.51. NCHS data also reveal that 78% of states would be able to capture >75% of their out-of-state births by sharing data on out-of-state births with the three neighboring states ranking highest in terms of such occurrences.
Few states have interstate birth defects data exchange agreements, though all states have resident births occurring out of state. While suggestive, data beyond residency of live births are needed to quantify the degree to which the objectives of state-based birth defects programs are compromised. Resources exist to guide programs in establishing interstate data exchange agreements. Efforts to establish such agreements with only a few neighboring states could be a large step toward improving birth defects surveillance on a state, regional, and national level.
无论婴幼儿在何处出生、被诊断或接受治疗，基于人群的出生缺陷监测的一个重要方面是确保将集水区内有出生缺陷的儿童纳入监测范围。然而，对于州际出生缺陷数据交换的缺失如何影响项目监测、监控、预防和转诊活动，我们知之甚少。本研究的目的是确定州际出生缺陷数据交换协议的现状，并量化本州居民在非本州出生的相关数据。
2004年，向美国所有基于人群的出生缺陷项目发放调查问卷，以确定：1）出生缺陷项目之间存在的州际出生缺陷数据交换协议的类型；2）建立交换协议时察觉到的障碍；3）州外出生对项目集水区的影响程度。利用国家卫生统计中心（NCHS）2002年的活产居住数据来确定州外活产发生的实际频率。
在接受调查的52个州和地区中，65%（n = 34）作出了回应。作出回应的州中约21%（n = 7）有州际数据交换协议，允许与另一个州或另一个州内的机构共享出生缺陷数据。约53%（n = 18）作出回应的州表示计划与其他州、医院或两者共同制定州际出生缺陷数据交换协议。NCHS的数据显示，本州居民在州外活产的实际比例在0.16%至11.51%之间。NCHS的数据还显示，78%的州通过与州外出生发生率排名最高的三个相邻州共享州外出生数据，能够掌握其75%以上的州外出生情况。
虽然所有州都有本州居民在州外出生的情况，但只有少数州有州际出生缺陷数据交换协议。虽然这些数据具有一定的启发性，但还需要出生居住地以外的数据来量化州级出生缺陷项目目标受影响的程度。现有资源可指导各项目建立州际数据交换协议。与少数相邻州建立此类协议的努力可能是朝着在州、区域和国家层面改善出生缺陷监测迈出的一大步。
