Speaking of research advance directives - Planning for future research participation
Speaking of research advance directives - Planning for future research participation
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DOI：
10.1212/01.wnl.0000216424.66098.55
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发表时间：
2006-05-09
期刊：
影响因子：
9.9
通讯作者：
Sachs, GA
中科院分区：
文献类型：
--
作者：
Stocking, CB;Hougham, GW;Sachs, GA
目的：研究一个模型的研究预先指令作为一种可能的方式，以减少病人和代理人之间的选择不匹配，也了解更多关于轻度至中度痴呆症患者可能希望保持决策或割让给他们的代理人在未来。方法：对149对痴呆患者及其家属进行单独访谈，了解未来五类研究的入组情况。随后对其中69对进行了联合访谈，以讨论他们分别做出的决定，并询问患者是否愿意按照他或她今天的指示或代理人认为未来最好的方式做出未来的入组决定。结果：在82.9%的试验中，患者选择将未来的决策权交给他们的代理人。在80.7%的试验中，患者将决定权交给了他们的代理人，其中二分体给出了相反的答案（n = 74，49.7%）。在45.7%的试验中，对代理人在试验中做出入组决定的前景表示不安的患者（n=49，32.9%）将决定权交给了他们的代理人。结论：患者和代理人都愿意讨论未来的研究招募的背景下，提前指示的研究。这样的文件可能有助于代理人和研究人员在未来判断患者愿意参加的研究类型和相关风险。虽然大多数病人愿意把未来的决定权交给他们的代理人，但也有相当一部分人不愿意这样做。
Objective: To examine one model of research advance directive as a possible way to reduce the mismatch between patient and proxy choices and also to learn more about how patients with mild to moderate dementia may want to keep decision making or cede it to their proxies in the future. Methods: Separate interviews were conducted with 149 dyads of dementia patients and family proxies about future enrollment in five types of research. Subsequent joint interviews were conducted with 69 of those dyads to discuss their separately articulated decisions and ask whether the patient prefers future enrollment decisions to be made as he or she directs today or as the proxy deems best in the future. Results: Patients chose to cede future decision making to their proxies in 82.9% of the trials. Patients ceded decisions to their proxies in 80.7% of those trials about which the dyad had given opposite answers (n = 74, 49.7%). Patients who had expressed discomfort about the prospect of the proxy making an enrollment decision in a trial (n=49, 32.9%) ceded decision making to their proxies in 45.7% of those trials. Conclusions: Both patients and proxies were willing to discuss future research enrollment in the context of an advance directive for research. Such a document may be helpful to proxies and researchers in the future to judge the types of research and associated risks patients are willing to enroll in. Although most patients willingly cede future decisions to their proxies, a sizeable minority do not wish to do so.