Surveillance for Sickle Cell Disease - Sickle Cell Data Collection Program, Two States, 2004-2018.

IF 37.3 1区 医学 Q1 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH
Angela B Snyder, Sangeetha Lakshmanan, Mary M Hulihan, Susan T Paulukonis, Mei Zhou, Sophia S Horiuchi, Karon Abe, Shammara N Pope, Laura A Schieve
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引用次数: 4

Abstract

Problem/condition: Sickle cell disease (SCD), an inherited blood disorder affecting an estimated 100,000 persons in the United States, is associated with multiple complications and reduced life expectancy. Complications of SCD can include anemia, debilitating acute and chronic pain, infection, acute chest syndrome, stroke, and progressive organ damage, including decreased cognitive function and renal failure. Early diagnosis, screenings and preventive interventions, and access to specialist health care can decrease illness and death. Population-based public health surveillance is critical to understanding the course and outcomes of SCD as well as the health care use, unmet health care needs, and gaps in essential services of the population affected by SCD.

Period covered: 2004-2018.

Description of the program: In 2015, CDC established the Sickle Cell Data Collection (SCDC) program to characterize the epidemiology of SCD in two states (California and Georgia). Previously, surveillance for SCD was conducted by two short-term projects: Registry and Surveillance System for Hemoglobinopathies (RuSH), which was conducted during 2010-2012 and included 2004-2008 data, and Public Health Research, Epidemiology, and Surveillance for Hemoglobinopathies (PHRESH), which was conducted during 2012-2014 and included 2004-2008 data. Both California and Georgia participated in RuSH and PHRESH, which guided the development of the SCDC methods and case definitions. SCDC is a population-based tracking system that uses comprehensive data linkages in state health systems. These linkages serve to synthesize and disseminate population-based, longitudinal data for persons identified with SCD from multiple sources using selected International Classification of Diseases, Ninth Revision, Clinical Modification, and Tenth Revision codes and laboratory results confirmed through state newborn screening (NBS) programs or clinic case reporting. Administrative and clinical data sources include state Medicaid and Children's Health Insurance Program databases, death certificates, NBS programs, hospital discharge and emergency department records, and clinical records or case reports. Data from multiple sources and years are linked and deduplicated so that states can analyze and report on SCD population prevalence, demographic characteristics, health care access and use, and health outcomes. The SCD case definition is based on an algorithm that classifies cases with laboratory confirmation as confirmed cases and those with a reported clinical diagnosis or three or more diagnostic codes over a 5-year period from an administrative data source as probable cases. In 2019, nine states (Alabama, California, Georgia, Indiana, Michigan, Minnesota, North Carolina, Tennessee, and Virginia) were funded as part of an SCDC capacity-building initiative. The newly funded states developed strategies for SCD case identification and data linkage similar to those used by California and Georgia. As of 2021, the SCDC program had expanded to 11 states with the addition of Colorado and Wisconsin.

Results: During 2004-2018, the cumulative prevalence of confirmed and probable SCD cases identified in California and Georgia was 9,875 and 14,777 cases, respectively. The 2018 annual prevalence count was 6,027 cases for California and 9,141 for Georgia. Examination of prevalence counts by contributing data source during 2014-2018 revealed that each data source captured 16%-71% of cases in California and 17%-87% in Georgia; therefore, no individual source is sufficient to estimate statewide population prevalence. The proportion of pediatric SCD patients (children aged 0-18 years) was 27% in California and 40% in Georgia. The percentage of females with SCD in California and Georgia was 58% and 57%, respectively. Of the cases with SCD genotyping data available (n = 5,856), 63% of patients had sickle cell anemia. SCDC data have been used to directly apprise health care providers and policymakers about health care needs and gaps for patients with SCD. For example, an SCDC Georgia assessment indicated that 10% of babies born during 2004-2016 with SCD lived more than a 1-hour drive from any SCD specialty care option, and another 14% lived within a 1-hour drive of a periodic SCD specialty clinic only. Likewise, an SCDC California assessment indicated that during 2016-2018, most patients with SCD in Los Angeles County lived approximately 15-60 miles from hematologists experienced in SCD care. A surveillance capacity and performance assessment of all 11 SCDC states during 2020-2021 indicated that states differed in the availability of data sources used for SCD surveillance and the time frames for accessing each state data source. Nonetheless, methods for standardizing reporting were developed across all participating states.

Interpretation: This report is the first comprehensive description of CDC's efforts in collaboration with participating states to establish, maintain, and expand SCD surveillance through the SCDC program to improve health outcomes for persons living with SCD. Findings from California and Georgia analyses highlighted a need for additional SCD specialty clinics. Despite different approaches, expansion of SCDC to multiple states was possible using standardized, rigorous methods developed across all participating states for reporting on disease prevalence, health care needs and use, and deaths.

Public health action: Findings from surveillance can be used to improve and monitor care and outcomes for persons with SCD. These and other SCDC analyses have had a role in opening new SCD clinics, educating health care providers, developing state health care policies, and guiding new research initiatives. Public health officials can use this report as a guiding framework to plan or implement surveillance programs for persons with SCD. Both data-related activities (data sources; patient identifiers; and obtaining, transferring, and linking data) and the administrative considerations (stakeholder engagement, costs and resources, and long-term sustainability) are crucial to the success of these programs.

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镰状细胞病监测-镰状细胞数据收集计划,两个州,2004-2018。
问题/状况:镰状细胞病(SCD)是一种遗传性血液病,在美国约有10万人患病,与多种并发症和预期寿命缩短有关。SCD的并发症可能包括贫血、使人衰弱的急性和慢性疼痛、感染、急性胸部综合征、中风和进行性器官损伤,包括认知功能下降和肾衰竭。早期诊断、筛查和预防性干预以及获得专业医疗保健可以减少疾病和死亡。基于人口的公共卫生监测对于了解SCD的过程和结果,以及受SCD影响的人群的医疗保健使用、未满足的医疗保健需求和基本服务差距至关重要。涵盖时间:2004-2018。项目描述:2015年,美国疾病控制与预防中心建立了镰状细胞数据收集(SCDC)计划,以表征两个州(加利福尼亚州和佐治亚州)的镰状细胞病流行病学。此前,SCD的监测由两个短期项目进行:血红蛋白病登记和监测系统(RuSH),于2010-2012年进行,包括2004-2008年的数据;公共卫生研究、流行病学和血红蛋白病监测(PHRESH),于2012-2014年进行,包括2004-2008年数据。加利福尼亚州和乔治亚州都参与了RuSH和PHRESH,指导了SCDC方法和案例定义的发展。SCDC是一个基于人口的跟踪系统,在州卫生系统中使用全面的数据链接。这些联系有助于综合和传播来自多个来源的SCD患者的基于人群的纵向数据,这些数据使用选定的国际疾病分类、第九次修订、临床修改和第十次修订代码以及通过国家新生儿筛查(NBS)计划或临床病例报告确认的实验室结果。行政和临床数据来源包括州医疗补助和儿童健康保险计划数据库、死亡证明、NBS计划、出院和急诊科记录以及临床记录或病例报告。将来自多个来源和年份的数据联系起来并消除重复,以便各州能够分析和报告SCD人口流行率、人口统计特征、医疗保健的获得和使用以及健康结果。SCD病例定义基于一种算法,该算法将实验室确认的病例分类为确诊病例,并将行政数据源在5年内报告的临床诊断或三个或三个以上诊断代码的病例归类为可能病例。2019年,作为SCDC能力建设倡议的一部分,九个州(阿拉巴马州、加利福尼亚州、佐治亚州、印第安纳州、密歇根州、明尼苏达州、北卡罗来纳州、田纳西州和弗吉尼亚州)获得了资助。新资助的州制定了类似于加利福尼亚州和佐治亚州的SCD病例识别和数据链接策略。截至2021年,SCDC计划已扩展到11个州,增加了科罗拉多州和威斯康星州。结果:2004-2018年,加利福尼亚州和佐治亚州确诊和疑似SCD病例的累计流行率分别为9875例和14777例。2018年加利福尼亚州的年度流行率为6027例,佐治亚州为9141例。2014-2018年期间,通过贡献数据源对流行率计数的检查显示,每个数据源在加利福尼亚州捕获了16%-71%的病例,在佐治亚州捕获了17%-87%的病例;因此,没有任何单独的来源足以估计全州的人口流行率。儿科SCD患者(0-18岁儿童)的比例在加利福尼亚州为27%,在佐治亚州为40%。加利福尼亚州和乔治亚州女性SCD患者的比例分别为58%和57%。在有SCD基因分型数据的病例中(n=5856),63%的患者患有镰状细胞性贫血。SCDC数据已被用于直接向医疗保健提供者和政策制定者通报SCD患者的医疗保健需求和差距。例如,佐治亚州SCDC的一项评估表明,在2004-2016年期间出生的SCD婴儿中,10%的婴儿居住在距离任何SCD专科护理选择超过1小时车程的地方,另有14%的婴儿居住的地方距离定期SCD专科诊所不到1小时车程。同样,SCDC加利福尼亚州的一项评估表明,在2016-2018年期间,洛杉矶县的大多数SCD患者居住在距离有SCD护理经验的血液学家约15-60英里的地方。2020-2021年期间,对所有11个SCDC州的监测能力和性能评估表明,各州在用于SCD监测的数据源的可用性和访问每个州数据源的时间框架方面存在差异。尽管如此,所有参与国都制定了报告标准化的方法。 解读:本报告首次全面描述了美国疾病控制与预防中心与参与州合作,通过SCDC计划建立、维持和扩大SCD监测,以改善SCD患者的健康状况。来自加利福尼亚州和乔治亚州的分析结果强调了增加SCD专科诊所的必要性。尽管采用了不同的方法,但使用所有参与州制定的标准化、严格的方法,报告疾病流行率、医疗保健需求和使用情况以及死亡情况,将SCDC扩展到多个州是可能的。公共卫生行动:监测结果可用于改善和监测SCD患者的护理和结果。这些和其他SCDC分析在开设新的SCD诊所、教育医疗保健提供者、制定州医疗保健政策和指导新的研究举措方面发挥了作用。公共卫生官员可以将这份报告作为指导框架,为SCD患者规划或实施监测计划。与数据相关的活动(数据源;患者标识符;以及获取、传输和链接数据)和行政考虑因素(利益相关者参与、成本和资源以及长期可持续性)对这些计划的成功至关重要。
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来源期刊
Mmwr Surveillance Summaries
Mmwr Surveillance Summaries PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH-
CiteScore
60.50
自引率
1.20%
发文量
9
期刊介绍: The Morbidity and Mortality Weekly Report (MMWR) Series, produced by the Centers for Disease Control and Prevention (CDC), is commonly referred to as "the voice of CDC." Serving as the primary outlet for timely, reliable, authoritative, accurate, objective, and practical public health information and recommendations, the MMWR is a crucial publication. Its readership primarily includes physicians, nurses, public health practitioners, epidemiologists, scientists, researchers, educators, and laboratorians.
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