Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research
Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research
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DOI：
10.1177/0269216306073112
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发表时间：
2006-01-01
影响因子：
4.4
通讯作者：
Tulsky, James A.
中科院分区：
文献类型：
--
作者：
Steinhauser, Karen E.;Clipp, Elizabeth C.;Tulsky, James A.
背景：为了改善姑息治疗的科学状况，我们必须提高记录患者和家属在生命结束时的实时经历的能力。然而，前瞻性测量经常受到患者识别、招募、登记和保留方面的困难的阻碍。姑息治疗文献中充斥着对无法达到登记目标的研究的描述，因此，没有足够的能力来检验假设或得出结论。目的：回顾描述与确定、登记和自然减员相关的困难的文献。概述一项对患者及其照顾者进行的新的纵向研究的成功招募方法。设计：一项为期两年的纵向研究，涉及240名患有IV期癌症(乳腺癌、前列腺癌、结直肠癌、肺癌)、晚期充血性心力衰竭(CHF)、LVEF 46的患者及其照顾者，在长达两年的时间里每月采访一次。使用来自一个地理区域的临床和管理数据库来识别患者。结果：代表性和成功的确定与使用临床标准和医疗记录回顾与医生或其他提供者的预测、使用私人医生的招聘信、招聘信内容、小册子内容、小额金钱奖励、精致的电话脚本、使用匹配的种族面试者、家庭和电话面试策略、测量选择、患者和照顾者的融洽以及持续的工作人员支持(包括悲痛和丧亲)相关。结论：在生命末期招募到前瞻性纵向研究是困难的，但也是可能的。从这项研究中学到的经验教训适用于未来进行前瞻性研究的研究者。
Background: In order to improve the state of science in palliative care, we must increase our ability to document the real-time experience of patients and families as they traverse the end of life. Yet, frequently, prospective measurement is impeded by difficulty with patient identification, recruitment, enrollment, and retention. The palliative care literature is replete with descriptions of studies unable to meet enrollment goals, and that as a result, do not have adequate power to test hypotheses or draw conclusions. Objectives: To review the literature describing difficulties associated with ascertainment, enrollment, and attrition. To outline the successful recruitment methods of a new longitudinal study of patients and their caregivers. Design: A two-year longitudinal study of 240 patients with Stage IV cancer (breast, prostate, colorectal, lung), advanced congestive heart failure (CHF) LVEF 46, and their caregivers, interviewed monthly for up to two years. Patients were identified using clinical and administrative databases from one geographic region. Results: Representative and successful ascertainment was associated with use of clinical criteria and medical record review versus physician or other provider prognostication, use of recruitment letters from personal physician, recruitment letter content, brochure content, small monetary incentives, refined phone scripts, use of matched ethnicity interviewers, in-home and phone interview strategies, measure selection, patient and caregiver rapport, and on-going staff support (including grief and bereavement). Conclusions: Recruitment to prospective longitudinal studies at the end of life is difficult, but possible. The lessons learned from this study are applicable to future investigators conducting prospective research.