Exploring how people with ALS make care decisions amid uncertainty about symptom progression.
For people living with amyotrophic lateral sclerosis (ALS), everyday activities such as speaking, eating, and swallowing can become increasingly difficult as the disease progresses. Researchers from UHN’s KITE Research Institute, Sunnybrook Health Sciences Centre, and the University of Toronto found that uncertainty about ALS progression can make it challenging for patients to decide when and how to manage their symptoms, highlighting the need for better support and communication from health care providers.
ALS is a progressive disease, and over time, many patients develop bulbar symptoms, which affect speech and swallowing functions. These symptoms are associated with reduced quality of life and can worsen rapidly once they appear. Therefore, early and timely intervention, such as communication aids, dietary changes, or feeding tubes, may help patients maintain function and independence. However, the unpredictable nature of ALS can make it difficult for patients to know when to act.
To better understand these challenges, the research team interviewed 12 adults with ALS, including people with and without bulbar symptoms.