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Development of a Practice-based PatientCohort for Primary Care Research

机译：基于实践的患者队列开发，用于基层医疗研究

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BACKGROUND AND OBJECTIVES: Efforts to develop "laboratories" for primary care research have largelyfocused on the development of networks that recruit subjects on a project-specific basis. We soughtto develop an alternative model—a representative cohort of adult primary care patients maintainedfor use in multiple projects. METHODS: In 2001, research assistants in waiting areas of a representativesample of 16 family medicine practices in North Carolina approached all adult patients duringa 4-week period. Follow-up has been maintained for 3 years. In 2004 and 2005, the cohort wasrefreshed by adding eight new practices. Each consenting subject was administered a four-page self reportquestionnaire that included items on demographics, risk factors, health status, and quality oflife. RESULTS: Of 10,649 eligible patients approached in 2001, 6,811 (64%) completed the enrollmentquestionnaire, of whom 5,575 (81.9%) consented to be included in the cohort. African Americans,Latinos, and older persons were enrolled at rates paralleling the state's adult population. Poor generalhealth, chronic illness, and risk factors for chronic disease were more prevalent in the cohortthan in the general population. Over 3 years, cohort members were included in multiple studies, and77% of the original cohort remained active. The per-subject enrollment cost varied between $27 and$45; annual program maintenance costs were estimated at approximately $35,000. CONCLUSIONS: Theresearch cohort has these advantages over traditional practice-based research networks: patientfocus rather than physician focus, a structure that places few demands on practices, ability to targetracial and ethnic minorities, and a better-defined patient population. As is true of all aspects ofresearch infrastructure, the cost of development and maintenance is significant.
机译：背景和目的：为基层医疗研究开发“实验室”的工作主要集中在网络开发方面，这些网络可以根据项目特定情况招募受试者。我们试图开发一种替代模型-维护有代表性的成人初级保健患者队列，以供多个项目使用。方法：2001年，在北卡罗来纳州16种家庭医学实践的代表性样本的候诊区域中，研究助理在4周内与所有成年患者进行了接触。随访已维持了3年。在2004年和2005年，通过增加八个新实践来刷新该队列。每个同意的受试者均接受四页的自我报告调查表，其中包括有关人口统计学，风险因素，健康状况和生活质量的项目。结果：在2001年接受的10649名合格患者中，有6811名（64％）完成了入组问卷调查，其中5575名（81.9％）同意纳入该队列。非裔美国人，拉丁裔和老年人的入学率与该州的成年人口相当。在一般人群中，一般健康状况较差，慢性病和慢性病危险因素比普通人群更为普遍。在3年多的时间里，该队列成员被纳入了多项研究，原始队列的77％仍然活跃。每个对象的注册费用在$ 27到$ 45之间;年度方案维护费用估计约为35,000美元。结论：与传统的基于实践的研究网络相比，Theresearch队列具有以下优势：以患者为中心而不是以医生为中心，对实践要求不高，针对种族和少数族裔的能力以及定义明确的患者群体的结构。正如研究基础结构的所有方面一样，开发和维护的成本是巨大的。

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