Supporting Trial Participation in People with the Huntington's Gene: A Patient-Centered, Theory-Guided Survey of Barriers and Enablers.

IF 2.1 Q3 NEUROSCIENCES Journal of Huntington's disease Pub Date : 2022-01-01 DOI:10.3233/JHD-220541
Kelly Carroll, Natasha Hudek, Angèle Bénard, Justin Presseau, Dawn P Richards, Marlin Susan, Dean A Fergusson, Ian D Graham, Tiago A Mestre, Jamie C Brehaut
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Abstract

Background: Under-recruitment regularly impedes clinical trials, leading to wasted resources and opportunity costs. Methods for designing trial participation strategies rarely consider behavior change theory.

Objective: Informed by the Theoretical Domains Framework, we identified factors important to participating in Huntington's disease research and provide examples of how such a theory-informed approach can make specific suggestions about how to design targeted recruitment strategies.

Methods: We identified a range of trial participation barriers and enablers based on interviews of key informants and implemented an online survey of members of the Huntington's disease community, asking them to rate the extent to which different factors would affect likelihood to participate in a generic Huntington's disease trial.

Results: From 4,195 members, we received 323 responses and 243 completed surveys (323/4,195 or 8% participation, 243/323 or 75% completion). Respondents endorsed 9 barriers and 23 enablers relevant to trial participation. Most frequently endorsed barriers were travel to the study site (69%), worry about unknown side effects (65%), trial documents being difficult to understand (64%), and participation affecting other activities (49%). Enablers included optimism about likelihood of trial participation leading to a cure (98%), helping others (98%), contributing to science (97%), and having helpful people available to help with the participation decision (89%).

Conclusion: Our theory-informed survey to identify barriers to and enablers of Huntington's disease trial participation identified 32 factors, from 13 theoretical domains relevant to trial participation, and suggests effective approaches for improving trial participation and patient experience.

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支持亨廷顿氏基因患者的试验参与:以患者为中心,理论指导的障碍和促进因素调查。
背景:招募不足经常阻碍临床试验,导致资源浪费和机会成本。参与试验策略的设计方法很少考虑行为改变理论。目的:在理论领域框架的指导下,我们确定了参与亨廷顿舞蹈病研究的重要因素,并提供了一些例子,说明这种理论指导方法如何就如何设计有针对性的招募策略提出具体建议。方法:基于对关键信息提供者的访谈,我们确定了一系列参与试验的障碍和促进因素,并对亨廷顿舞蹈病社区的成员进行了在线调查,要求他们对不同因素影响参加普通亨廷顿舞蹈病试验的可能性的程度进行评估。结果:从4195名会员中,我们收到了323份回复和243份完成的调查(323/ 4195或8%的参与率,243/323或75%的完成率)。答复者赞同与参与试验有关的9个障碍和23个促进因素。最常见的障碍是前往研究地点(69%),担心未知的副作用(65%),试验文件难以理解(64%),以及参与影响其他活动(49%)。促成因素包括对参与试验导致治愈的可能性持乐观态度(98%),帮助他人(98%),为科学做出贡献(97%),并有乐于助人的人帮助参与决策(89%)。结论:我们基于理论的调查确定了亨廷顿病参与试验的障碍和促进因素,从13个与试验参与相关的理论领域中确定了32个因素,并提出了提高试验参与和患者体验的有效方法。
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来源期刊
CiteScore
4.80
自引率
9.70%
发文量
60
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