Co-production of a preference-based measure of health-related quality of life for ALS

Currently, no available assessment tool has been developed in collaboration with Canadians living with ALS that sufficiently accounts for or values their needs and preferences in the context of the Canadian healthcare system. Conventional measurement tools tend to focus on the physical factors of the disease and ignore the value of a potential treatment on quality of life.

With this grant, Dr. Kuspinar and Dr. Dal Bello-Haas will develop a new tool called the Preference-Based ALS Index (PB-ALS) with essential input from Canadians living with ALS and ALS expert clinicians in the Canadian ALS Research Network (CALS). Participating volunteers will identify specific aspects of their life that has been affected by ALS, such as their social life, relationship with family and friends and ability to work. Each participant will rate how they are doing for each domain and prioritize the domains where they see the most need for improvement. The tool will attach an economic value to each factor, allowing the researchers to calculate an overall score that incorporates gains in one health area with losses in another.

Dr. Kuspinar and Dr. Dal Bello-Haas anticipate that gathering this cost-effectiveness information during clinical trials will help measure the value of therapies on the quality of life of someone living with ALS. The goal is to enable this information to be used during the drug access pathway in order to expedite Health Canada approval and provincial funding decisions for new ALS drugs in the future, resulting in Canadians gaining faster access to new treatments.