将临床研究数据与人群数据库关联。
Linking clinical research data to population databases.
机构信息
Linda S. Edelman, PhD, RN, is Assistant Professor; and Jia-Wen Guo, PhD, RN, is Assistant Professor, College of Nursing, University of Utah, Salt Lake City. Alison Fraser, MSPH,is Senior Database Analyst, University of Utah Huntsman Cancer Institute, Salt Lake City. Susan L. Beck, PhD, APRN, FAAN, is Professor and Robert S. and Beth M. Carter Endowed Chair in Nursing, College of Nursing, University of Utah, Salt Lake City.
出版信息
Nurs Res. 2013 Nov-Dec;62(6):438-44. doi: 10.1097/NNR.0000000000000002.
BACKGROUND
Most clinical nursing research is limited to funded study periods. However, if clinical research data can be linked to population databases, researchers can study relationships between study measures and poststudy long-term outcomes.
OBJECTIVES
The objective was to describe the feasibility of linking research participant data to data from population databases in order to study long-term poststudy outcomes. As an exemplar, participants were linked from a completed oncology nursing research trial to outcomes data in two state population databases.
METHODS
Participant data from a previously completed symptom management study were linked to the Utah Population Database and the Utah Emergency Department Database. The final data set contained demographic, cancer diagnosis and treatment and baseline data from the oncology study linked to poststudy long-term outcomes from the population databases.
RESULTS
One hundred twenty-nine of 144 (89.6%) study were linked to their individual data in the population databases. Of those, 73% were linked to hospitalization records, 60% were linked to emergency department visit records, and 28% were identified as having died.
DISCUSSION
Study participant data were successfully linked to population databases data to describe poststudy emergency department visit and hospitalization numbers and mortality. The results suggest that data linkage success can be improved if researchers include linkage and human subjects protection plans related to linkage in the initial study design.
背景
大多数临床护理研究仅限于有资金支持的研究期间。然而，如果将临床研究数据与人群数据库相关联，研究人员就可以研究研究措施与研究后长期结果之间的关系。
目的
描述将研究参与者数据与人群数据库数据相联系以研究长期研究后结果的可行性。作为一个范例，将来自一项已完成的肿瘤护理研究试验的参与者与两个州人群数据库中的结果数据相联系。
方法
将先前完成的一项症状管理研究中的参与者数据与犹他州人群数据库和犹他州急诊部数据库相联系。最终数据集包含从肿瘤学研究中提取的人口统计学、癌症诊断和治疗以及基线数据，并与人群数据库中的研究后长期结果相联系。
结果
在 144 名研究参与者中，有 129 名（89.6%）成功与人群数据库中的个人数据相联系。其中，73%的人有住院记录，60%的人有急诊部就诊记录，28%的人被确定已经死亡。
讨论
成功地将研究参与者数据与人群数据库数据相联系，以描述研究后的急诊就诊和住院人数以及死亡率。研究结果表明，如果研究人员在初始研究设计中包括与关联相关的关联和人类受试者保护计划，那么数据关联的成功率可以提高。
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