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. Using in-depth interview techniques, the researchers explored how patients approached decisions about symptom management and what support they wanted from health care professionals.   

After analyzing participant responses, three key themes emerged: disease uncertainty; quality of information; and personal values and beliefs. Uncertainty about when symptoms might appear or worsen often delayed discussions about treatment options. Some participants preferred to wait until symptoms developed, while others wanted to learn about future options early to plan ahead. Participants also emphasized the importance of receiving clear, personalized information tailored to their individual circumstances, including how symptoms might progress and when interventions should be considered. This helped patients feel more prepared to make decisions. Finally, personal values and beliefs played a key role in decision-making. Priorities included maintaining quality of life, preserving independence, supporting family relationships, and reducing burdens on loved ones, which often influenced decisions.   

The findings highlight the need for more person- and family-centered ALS care. Providing timely individualized information and incorporating patients’ values and family perspectives may help patients navigate the complex care decisions that come with living with ALS.  

Anna Huynh, first and corresponding author of the study, is a PhD Candidate at the Rehabilitation Sciences Institute at the University of Toronto in the lab of Dr. Yana Yunusova. 

Dr. Yana Yunusova, senior author of the study, is a Senior Scientist at UHN’s KITE Research Institute and the Sunnybrook Research Institute. Dr. Yunusova is also a Professor in the Department of Speech-Language Pathology and Director of the Rehabilitation Sciences Institute at the University of Toronto.  

This work was supported by the National Institutes of Health, KITE-Toronto Rehabilitation Institute, Fondation Vincent Bourque, ALS Canada, and Brain Canada. Operational support for the KITE Research Institute was provided by UHN Foundation. 

The research team is grateful to the research participants—patients living with ALS—as well as ALS neurology partners, Drs. Lorne Zinman and Agessandro Abrahao. 

Huynh A, Cranley L, Barnett-Tapia C, Abrahao A, Zinman L, Yunusova Y. Understanding patients' experiences and needs around decision-making for bulbar symptom management at a multidisciplinary ALS clinic. Disabil Rehabil. 2026 Jul 1. doi: 10.1080/09638288.2026.2693395.