利用国家行政数据源研究患有罕见病的青少年和青年。
Use of state administrative data sources to study adolescents and young adults with rare conditions.
作者信息
Royer J A, Hardin J W, McDermott S, Ouyang L, Mann J R, Ozturk O D, Bolen J
机构信息
Division of Research and Statistics, South Carolina Budget and Control Board, 1919 Blanding Street, Columbia, SC, 29201, USA,
出版信息
J Gen Intern Med. 2014 Aug;29 Suppl 3(Suppl 3):S732-8. doi: 10.1007/s11606-014-2925-7.
BACKGROUND
Effective 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.
OBJECTIVE
To develop a method for studying health care of young persons with rare conditions using this repository.
METHODS
We 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.
RESULTS
We 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.
CONCLUSIONS
We 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.
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治疗以及教育和社会支持服务。然而，由于数据有限，往往缺乏关于治疗的信息。南卡罗来纳州有一个综合健康和人类服务数据存储库，通过它可以在多个州机构和组织的数据系统中跟踪个人。
目的
利用这个存储库开发一种研究患有罕见疾病的年轻人医疗保健情况的方法。
方法
我们使用一系列算法识别出在2000年至2010年期间被诊断患有脆性X综合征（FXS）、脊柱裂（SB）或肌肉萎缩症（MD）的15至24岁个体。国际疾病分类第九版临床修正本（ICD-9-CM）编码最初用于从医疗计费数据中识别该队列。然后从相关的行政来源提取人口统计学、医疗护理、就业、教育和社会经济地位数据。
结果
我们识别出1040名患有这些罕见疾病的个体：125名患有FXS，695名患有SB，220名患有MD。绝大多数病例（95%）是在医疗补助数据库中识别出来的。该队列中有一半是男性，在FXS和MD组中比例更高。该队列中有62%的人在高中最后一年入学。超过一半的队列接受了该州残疾和特殊需求机构的支持服务；16%的人接受了食品援助。38%的人在研究期间的某个时间点就业。在研究期间，有49名患有SB的人和56名患有MD的人死亡。
结论
我们使用了一个全州范围的关联数据系统来研究罕见疾病。优点包括信息的多样性、严格的识别策略以及获取纵向数据。尽管行政数据存在固有局限性，但我们发现关联的州数据系统是调查关于罕见疾病的重要公共卫生问题的宝贵资源。
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