Use of state administrative data sources to study adolescents and young adults with rare conditions.
Use of state administrative data sources to study adolescents and young adults with rare conditions.
复制标题
利用国家行政数据源研究患有罕见疾病的青少年和年轻人。
DOI：
10.1007/s11606-014-2925-7
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发表时间：
2014
影响因子：
5.7
通讯作者：
Bolen,J
中科院分区：
文献类型：
--
作者：
Royer,JA;Hardin,JW;McDermott,S;Ouyang,L;Mann,JR;Ozturk,OD;Bolen,J
背景：为患有罕见疾病的年轻人提供有效的护理需要持续的协调医疗以及教育和社会支持服务。然而，由于数据有限，有关治疗的信息往往缺乏。南卡罗来纳州有一个全面的健康和公共服务数据存储库，可以通过多个州机构和组织的数据系统跟踪个人。目的开发一种方法，使用该存储库研究患有罕见疾病的年轻人的医疗保健。方法我们使用一系列算法确定了2000-2010年间诊断为脆性X综合征(FXS)、脊柱裂(SB)或肌营养不良(MD)的15至24岁的个人。ICD-9-CM编码用于从医疗账单数据中初步识别队列。然后从相关的管理来源中提取人口统计学、医疗保健、就业、教育和社会经济状况数据。结果我们确定了1040名患有这些罕见疾病的人：125例FXS，695例SB和220例MD。绝大多数病例(95%)是在医疗补助数据库中确定的。队列中有一半是男性，在FXS和MD组中比例更高。62%的人是在高中最后一年入学的。超过一半的人得到了州残疾和特殊需要机构的支持服务；16%的人得到了食品援助。38%的人在研究期间的某个时候找到了工作。49名SB患者和56名MD患者在研究期间死亡。结论我们使用了一个链接的全州数据系统来研究罕见情况。优势包括信息的多样性、严格的识别策略和对纵向数据的访问。尽管行政数据存在固有的局限性，但我们发现，关联的州数据系统对于调查罕见情况下的重要公共卫生问题是宝贵的资源。
BACKGROUNDEffective care of young people with rare conditions requires ongoing coordinated medical treatment as well as educational and social support services. However, information on treatment is often lacking due to limited data. South Carolina has a repository of comprehensive health and human service data with which individuals may be tracked across the data systems of multiple state agencies and organizations.OBJECTIVETo develop a method for studying health care of young persons with rare conditions using this repository.METHODSWe identified individuals aged 15 to 24 years diagnosed during 2000–2010 with Fragile X syndrome (FXS), spina bifida (SB), or muscular dystrophy (MD) using a series of algorithms. ICD-9-CM codes were used to initially identify the cohort from medical billing data. Demographics, medical care, employment, education, and socioeconomic status data were then extracted from linked administrative sources.RESULTSWe identified 1,040 individuals with these rare conditions: 125 with FXS, 695 with SB, and 220 with MD. The vast majority of the cases (95 %) were identified in the Medicaid database. Half of the cohort was male, with a higher percentage in the FXS and MD groups. Sixty-two percent of the cohort was enrolled in the last year of high school. Over half of the cohort received support services from the state’s disability and special-needs agency; 16 % received food assistance. Thirty-eight percent were employed at some point during the study period. Forty-nine individuals with SB and 56 with MD died during the study period.CONCLUSIONSWe used a linked statewide data system to study rare conditions. Strengths include the diversity of information, rigorous identification strategies, and access to longitudinal data. Despite limitations inherent to administrative data, we found that linked state data systems are valuable resources for investigating important public health questions on rare conditions.