Improving shared decision-making surrounding dysphagia management for persons diagnosed with Amyotrophic Lateral Sclerosis

项目摘要 高达92%的被诊断患有肌萎缩侧索硬化症的人出现吞咽障碍 在疾病的过程中，这与吸入性肺炎和 营养不良，并已被发现对生存有负面的预后影响。由于…… 这些吞咽障碍，患者都面临着要不要喂食的决定 管是否放置。对于被诊断为肌萎缩侧索硬化症的患者及其医疗保健提供者，决定 长期以来，制作周围的饲养管放置一直是各种 原因包括发病时间的广泛异质性和不可预测性，以及 进行性吞咽困难和对患者的目标和关注的缺乏理解 管理策略的权衡、收益和风险。由美国国家科学研究院认可 医学作为提高医疗质量的一种方式，共享决策鼓励患者 积极权衡治疗的风险和好处，并将其与其个人 偏好。共享决策工具(即决策辅助工具)已被发现增加 患者对决策的了解，减少决策冲突，积极影响患者- 临床医生沟通，提高患者对许多重要决策的满意度 临床医学领域。8拟议研究的主要目标是开发和测试 决策辅助工具，提高患者对决策的了解，解决患者和 护理人员的目标和围绕该决定的关注事项，并改善患者和医生 在整个决策过程中进行沟通。在目标1中，我们将确定患者和 护理人员的目标和关注的问题围绕着饲管放置使用定性和 以调查为基础的研究方法。在具体目标2和3中，我们将使用以用户为中心和 参与式研究战略，以开发和测试可行性、可接受性和潜力 用于喂养管放置决策的个性化决策辅助原型的有效性。 在被诊断为肌萎缩侧索硬化症的患者中制作。这些目标与一套精心策划的 培训目标和一组高度跨学科的导师，以提供主要调查人员 具备成功过渡到研究独立性所需的技能 这份工作。

Project Summary As many as 92% percent of persons diagnosed with ALS develop swallowing impairments over the course of the disease, which have been linked to aspiration pneumonia and malnutrition and have been found to have negative prognostic effects on survival. As a result of these swallowing impairments, patients are faced with the decision of whether to have a feeding tube placed or not. For patients diagnosed with ALS and their healthcare providers, decision making surrounding feeding tube placement has long been a significant challenge for a variety of reasons including the wide heterogeneity and unpredictability in the timing of the onset and progression of dysphagia and a lack of understanding of patients’ goals and concerns about tradeoffs, benefits, and risks of management strategies. Endorsed by the National Institute of Medicine as a way to improve health care quality, shared decision-making encourages patients to actively weigh the risks and benefits of a treatment and match them to their personal preferences. Shared-decision making tools (i.e. decision aids) have been found to increase patient knowledge about a decision, decrease decisional conflict, positively affect patient- clinician communication, and increase patient satisfaction with important decisions in many areas of clinical medicine.8 The primary objective of the proposed study is to develop and test a decision aid that improves patients’ knowledge about the decision, addresses patient and caregivers’ goals and concerns surrounding the decision, and improves patient and physician communication throughout the decision-making process. In aim 1, we will determine patient and caregiver goals and concerns surrounding feeding tube placement using both qualitative and survey-based research methods. In specific aims 2 and 3, we will use user-centered and participatory research strategies to develop and test the feasibility, acceptability, and potential effectiveness of a personalized decision aid prototype for feeding tube placement decision- making in patients diagnosed with ALS. These aims are closely matched with a curated set of training goals and a highly interdisciplinary set of mentors to provide the primary investigator with the skills needed to successfully transition to research independence upon completion of the work.