Clients with amyotrophic lateral sclerosis (ALS) experience significant participation restrictions and are also susceptible to loss of quality of life (QOL) as their disease progresses. A staggering 92% of patients reported activity participation restrictions as a result of factors directly impacted by ALS (Van Groenestijn et al., 2017). Occupational therapists are uniquely positioned to preserve participation and quality of life through assessment and treatment. Our research team aims to measure the impact of changes in participation and quality life during the natural progression of ALS, in their repeated visits to our interdisciplinary clinic.

The major client factors shown to limit participation in people with ALS are dysarthria, lung capacity, functional mobility, fatigue, helplessness, rate of progression, and cognition (Van Groenestijn et al., 2017). Maintaining participation in meaningful daily activities in the final years of life, such as social gatherings, hobbies, or self-care, is vital to preserving patient quality of life as the disease progresses (Van Groenestijn et al., 2017). Currently, our team is in the process of piloting the use of the Activity Card Sort 3 (Baum & Edwards) and the Assessment of Life Habits (Fougeyrollas & Noreau, 2015) to assess these factors in people with ALS.

Quality of life has been extensively researched in the ALS population. Some factors that may influence QOL in persons with ALS include psychological health, dysphagia, fatigue, pain, multidisciplinary care, financial and social support, and religion/spirituality (Simmons, 2014). It is valuable to evaluate changes in QOL in individuals with ALS to attempt to mitigate factors that may contribute negatively, and to determine which factors might be protective. In our multidisciplinary clinic, we use the ALS-Specific Quality of Life- Short Form (Felgoise et al., 2018) to gain an understanding of each client’s individual perception of their QOL throughout disease progression.

Measurement of outcomes focused on rehabilitation is lacking within the literature, but is needed for people with ALS. While the majority of funded research seeks to find cures and medications to mitigate symptoms, our research group focuses instead on promotion and maintenance of participation. We are currently working to prospectively measure QOL, participation, and factors including strength and functional mobility that may also contribute to changes in daily activity participation.

Dr. Meghan Doherty and Sarah Schuman have made a large impact on Andi and Briana’s research experience thus far and they feel lucky to be a part of such a supportive research team. Over the past year, Dr. Meghan Doherty and Sarah Schuman have always been encouraging and have given Andi and Briana room to make mistakes and grow as researchers and occupational therapists. Their mentorship has meant the world to Andi and Briana and they cannot wait to continue to be a part of the research team over the course of the next year.