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

改善肌萎缩侧索硬化症患者吞咽困难管理的共同决策

基本信息

批准号：
10593151
负责人：
Bridget J Perry
金额：
$ 17.5万
依托单位：
MGH INSTITUTE OF HEALTH PROFESSIONS
依托单位国家：
美国
项目类别：
财政年份：
2022
资助国家：
美国
起止时间：
2022-04-01 至 2027-03-31
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10593151
关键词：
Address Affect American Amyotrophic Lateral Sclerosis Area Aspiration Pneumonia Benefits and Risks Caregivers Client satisfaction Clinic Visits Clinical Clinical Management Clinical Medicine Collaborations Communication Conflict (Psychology)Decision Aid Decision Making Deglutition Deglutition Disorders Development Diagnosis Disease Eating Effectiveness Enteral Feeding Environment Florida General Hospitals Goals Health Occupations Health Personnel Heterogeneity Hospitals Impairment Institute of Medicine (U.S.)International Knowledge Life Link Longevity Malnutrition Massachusetts Mentors Methodology Methods Neuromuscular Diseases Participant Patient Care Patient Preferences Patient-Centered Care Patients Pattern Persons Physicians Population Process Provider Quality of life Recommendation Reporting Research Research Methodology Research Personnel Risk Management Schedule Source Structure Surveys Testing Time Training Uncertainty Universities Work clinical practice disabling symptom expectation feasibility testing health care quality improved multidisciplinary nutrition patient oriented patient-clinician communication personalized decision preference prognostic prototype provider communication shared decision making skills tool treatment choice treatment planning user centered design web based decision aid

项目摘要

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.

项目总结