Sloane Philip D, Callahan Leigh, Kahwati Leila, Mitchell C Madeline
Department of Family Medicine, Cecil G. Sheps Center for Health Services Research, University of North Carolina, USA.
Fam Med. 2006 Jan;38(1):50-7.
Efforts to develop "laboratories" for primary care research have largely focused on the development of networks that recruit subjects on a project-specific basis. We sought to develop an alternative model--a representative cohort of adult primary care patients maintained for use in multiple projects.
In 2001, research assistants in waiting areas of a representative sample of 16 family medicine practices in North Carolina approached all adult patients during a 4-week period. Follow-up has been maintained for 3 years. In 2004 and 2005, the cohort was refreshed by adding eight new practices. Each consenting subject was administered a four-page self report questionnaire that included items on demographics, risk factors, health status, and quality of life.
Of 10,649 eligible patients approached in 2001, 6,811 (64%) completed the enrollment questionnaire, 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 general health, chronic illness, and risk factors for chronic disease were more prevalent in the cohort than in the general population. Over 3 years, cohort members were included in multiple studies, and 77% of the original cohort remained active. The per-subject enrollment cost varied between 27 US dollars and 45 US dollars; annual program maintenance costs were estimated at approximately 35,000 US dollars.
The research cohort has these advantages over traditional practice-based research networks: patient focus rather than physician focus, a structure that places few demands on practices, ability to target racial and ethnic minorities, and a better-defined patient population. As is true of all aspects of research infrastructure, the cost of development and maintenance is significant.
为基层医疗研究建立“实验室”的努力主要集中在建立基于特定项目招募受试者的网络。我们试图开发一种替代模式——建立一个成年基层医疗患者的代表性队列，供多个项目使用。
2001年，北卡罗来纳州16家家庭医学诊所的代表性样本的候诊区研究助理在4周内接触了所有成年患者。随访持续了3年。2004年和2005年，通过增加8家新诊所更新了队列。每位同意参与的受试者都填写了一份四页的自我报告问卷，内容包括人口统计学、风险因素、健康状况和生活质量等项目。
2001年接触的10649名符合条件的患者中，6811名（64%）完成了入组问卷，其中5575名（81.9%）同意纳入队列。非裔美国人、拉丁裔和老年人的入组率与该州成年人口比例相当。队列中总体健康状况较差、患有慢性病和慢性病风险因素的情况比普通人群更为普遍。在3年多的时间里，队列成员参与了多项研究，77%的原始队列成员仍然活跃。每位受试者的入组成本在27美元至45美元之间；年度项目维护成本估计约为35000美元。
与传统的基于实践的研究网络相比，该研究队列具有以下优势：以患者为中心而非以医生为中心，对诊所要求较低的结构，针对少数族裔的能力，以及定义更明确的患者群体。与研究基础设施的所有方面一样，开发和维护成本很高。
