Improving Shared Decision-Making Surrounding Dysphagia Management for Persons Diagnosed with Amyotrophic Lateral Sclerosis

项目摘要 多达92%的ALS患者会出现吞咽障碍 在疾病的过程中，这与吸入性肺炎有关， 营养不良，并已发现对生存有负面的预后影响。的结果 这些吞咽障碍，患者面临着是否有喂养的决定 管放置或不。对于被诊断患有ALS的患者及其医疗保健提供者， 长期以来，围绕饲管放置对于各种 原因包括发病时间的广泛异质性和不可预测性， 吞咽困难的进展以及对患者的目标和关注缺乏了解， 管理策略的权衡、收益和风险。由国家研究所认可， 医学作为提高医疗质量的一种方式，共同决策鼓励患者 积极权衡治疗的风险和益处，并将其与个人 喜好共享决策工具（即决策辅助工具）已被发现增加 患者了解决策，减少决策冲突，积极影响患者- 临床医生沟通，并提高患者对许多重要决策的满意度 8拟议研究的主要目的是开发和测试一种 决策辅助，提高患者对决策的了解，解决患者和 护理人员的目标和关注的决定，并提高病人和医生 在整个决策过程中的沟通。在目标1中，我们将确定患者和 护理者的目标和关注点围绕喂养管放置使用定性和 调查研究方法。在具体目标2和3中，我们将使用以用户为中心的 参与式研究策略，以开发和测试的可行性，可接受性和潜力 用于饲管放置决策的个性化决策辅助原型的有效性- 在被诊断患有ALS的患者中。这些目标与一套精心策划的 培训目标和一个高度跨学科的导师组，以提供主要研究者 与所需的技能，成功地过渡到研究独立完成后， 中求进工作总

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.