PDF(Pubmed)
Abstract：
Incorporating person-centered outcomes into clinical trials for neurodegenerative diseases has been challenging due to a deficiency in quantitative measures. Meanwhile, the integration of personally meaningful treatment targets in clinical practice remains qualitative, failing to truly inform evaluations, therapeutic interventions and longitudinal monitoring and support. We discuss the current advances and future directions in capturing individualized brain health outcomes and present an approach to integrate person-centered outcome in a scalable manner. Our approach stems from the evidence-based electronic Person-Specific Outcome Measure (ePSOM) program which prompts an individual to define personally meaningful treatment priorities and report level of confidence in managing items that matter to the individual the most (e.g., \"Do I feel confident in my ability to contribute to a conversation?\"). Deployed either as a single version (person only) or a dyad version (person and care partner), our proposed tool could be used as an endpoint in clinical trials, offering proof of meaningful intervention benefits and in clinical practice, by establishing an anchor for the therapeutic objectives sought by the individual.
摘要：
由于定量措施的不足，将以人为本的结果纳入神经退行性疾病的临床试验具有挑战性。同时,个人有意义的治疗目标在临床实践中的整合仍然是定性的，未能真正为评估提供信息，治疗干预和纵向监测和支持。我们讨论了捕获个性化大脑健康结果的当前进展和未来方向，并提出了一种以可扩展方式整合以人为本的结果的方法。我们的方法源于基于证据的电子个人特定结果度量（ePSOM）计划，该计划提示个人定义个人有意义的治疗优先级，并报告管理对个人最重要的项目的信心水平（例如，\“我对自己的对话能力有信心吗？”）。部署为单一版本（仅限个人）或二重版本（个人和护理合作伙伴），我们提出的工具可以用作临床试验的终点，提供有意义的干预益处的证据，并在临床实践中，通过为个体寻求的治疗目标建立锚。
