VITALS Trial: Comparing the Impact of Video Integration to Traditional Amyotrophic Lateral Sclerosis Visit Communication on Patient and Caregiver Quality of Life

Patient Centered Outcome Research Institute (PCORI

08/01/2025 – 07/31/2031

Paul J. Barr, PhD MPH (Geisel School of Medicine, Dartmouth), Suma Babu, MBBS, MPH (Massachusetts General Health, Harvard Medical School)

Patient and caregiver partners: Katrina Byrd, David Garland, Deborah Garland, Raziel Green, William O’Sullivan, Linda O’Sullivan, Sridhar Tummala

Site PIs: Mark Garret, MD (Dartmouth Health, Lebanon NH), Stephen Johnson, MD (Mayo Clinic, Scottsdale AZ); Björn Oskarsson, MD (Mayo Clinic, Jacksonville FL); Zachary Simmons, MD (Penn State Health Milton S. Hershey Medical Center, Hershey PA); Tawfiq Al-Lahham, MD ( University of Pittsburgh Medical Center, Pittsburgh PA); Kelly Gwathmey, MD (Virginia Commonwealth University, Richmond VA); Colin Kreple, MD (University of Wisconsin School of Medicine and Public Health, Madison WI); Reed Bratches, PhD (University of Alabama at Birmingham, Birmingham AL).

Co-Is: James O’Malley, PhD (Geisel School of Medicine at Dartmouth, Lebanon NH); Renata Yen, PhD, CTBH Geisel School of Medicine at Dartmouth, Lebanon NH); Alejandra Martinez, PhD (CTBH, Geisel School of Medicine at Dartmouth, Lebanon NH); Elizabeth Carpenter-Song, PhD (Dept. of Anthropology, Dartmouth College, Hanover NH); Elijah Stommel, MD (Dartmouth Health, Lebanon NH); Timothy Burdick, MD (Dartmouth Health, Lebanon NH); David Lacomis, MD (University of Pittsburgh Medical Center, Pittsburgh PA).

Amyotrophic lateral sclerosis (ALS) is a fatal, rare neurodegenerative disease affecting 30,000 people in the United States. People with ALS (pwALS) and their caregivers, attend 3 – 5 hour long multidisciplinary clinics (MDC) every 3 months where they meet with up to 12 specialists. The goal of treatment is to maintain pwALS quality of life (QOL). Optimal information from MDCs is necessary for the intensive at-home management which gets more complex as ALS progresses. Yet 40% of recommendations are forgotten by pwALS negatively impacting QOL, while caregivers report information deficits increasing caregiving burden. Patient portal access to MDC notes is standard, and can improve recall and health outcomes, yet concerns exist about their layout, comprehensiveness and challenges for people with low health literacy.

An underutilized strategy to share MDC information is video recording. Systematic reviews find recordings improve health outcomes, and the use of video in an ALS context may be particularly helpful given complicated at-home management. We plan to discover what is the most effective approach to communicating MDC information to facilitate optimal delivery of care for pwALS and their caregivers

Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease requiring complex management. Multidisciplinary clinics (MDCs) provide comprehensive care, but people with ALS (pwALS) and care partners often recall less than 40% of recommendations. The proposed research will determine the impact of the emerging strategy of video recording and sharing of clinic visits on the ability of pwALS and their care partners to manage their healthcare. It is expected that findings from this project will inform future policy related to the use of videorecording as part of routine care in ALS and guide implementation strategies.