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

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.