关键词: best-worst scaling dementia with Lewy bodies discrete choice experiment patient and public involvement patient perspective preferences pretesting stated preference survey

来  源:   DOI:10.3389/frdem.2024.1421556   PDF(Pubmed)

Abstract:
UNASSIGNED: The development of high-quality stated preference (SP) surveys requires a rigorous design process involving engagement with representatives from the target population. However, while transparency in the reporting of the development of SP surveys is encouraged, few studies report on this process and the outcomes. Recommended stages of instrument development includes both steps for stakeholder/end-user engagement and pretesting. Pretesting typically involves interviews, often across multiple waves, with improvements made at each wave; pretesting is therefore resource intensive. The aims of this paper are to report on the outcomes of collaboration with a Lewy body dementia research advisory group during the design phase of a SP survey. We also evaluate an alternative approach to instrument development, necessitated by a resource constrained context.
UNASSIGNED: The approach involved conducting the stages of end-user engagement and pretesting together during a public involvement event. A hybrid approach involving a focus group with breakout interviews was employed. Feedback from contributors informed the evolution of the survey instrument.
UNASSIGNED: Changes to the survey instrument were organized into four categories: attribute modifications; choice task presentation and understanding; information presentation, clarity and content; and best-best scaling presentation. The hybrid approach facilitated group brainstorming while still allowing the researcher to assess the feasibility of choice tasks in an interview setting. However, greater individual exploration and the opportunity to trial iterative improvements across waves was not feasible with this approach.
UNASSIGNED: Involvement of the research advisory group resulted in a more person-centered survey design. In a context constrained by time and budget, and with consideration of the capacity and vulnerability of the target population, the approach taken was a feasible and pragmatic mechanism for improving the design of a SP survey.
摘要:
高质量的陈述偏好(SP)调查的开发需要严格的设计过程,涉及目标人群的代表参与。然而,虽然鼓励报告SP调查发展的透明度,很少有研究报告这一过程和结果。仪器开发的推荐阶段包括利益相关者/最终用户参与和预测试两个步骤。前测通常包括面试,经常跨越多个波浪,在每一波都有改进;因此,预测试是资源密集型的。本文的目的是报告在SP调查的设计阶段与路易体痴呆症研究咨询小组合作的结果。我们还评估了仪器开发的替代方法,资源受限的环境所必需的。
该方法涉及在公众参与活动期间进行最终用户参与和预先测试的阶段。采用了一种混合方法,该方法涉及一个具有突破性访谈的焦点小组。来自贡献者的反馈告知了调查工具的演变。
对测量工具的更改分为四类:属性修改;选择任务的演示和理解;信息演示,清晰度和内容;以及最佳-最佳缩放演示。混合方法促进了小组头脑风暴,同时仍允许研究人员在面试环境中评估选择任务的可行性。然而,通过这种方法,更多的个体探索和尝试跨波迭代改进的机会是不可行的.
研究咨询小组的参与导致了更加以人为本的调查设计。在受时间和预算限制的情况下,并考虑到目标人群的能力和脆弱性,所采取的方法是改进SP调查设计的可行和务实的机制。
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