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Do Video Recordings of Multidisciplinary Clinics Improve Quality of Life for People With ALS and Their Caregivers?

Sponsor: Trustees of Dartmouth College • ClinicalTrials.gov ID: NCT07454733

Registry updated: 2026-10-08

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Description

Amyotrophic lateral sclerosis (ALS) is a fatal, rare neurodegenerative disease affecting 30,000 people in the United States. The gold standard of care for people with ALS is multidisciplinary clinics (MDC). In these multidisciplinary clinics, which occur every 3 to 4 months, people with ALS see up to 12 different healthcare providers (e.g., speech therapy, physical therapy, the ALS doctor). These clinics can last from three to five hours, and across these three to five hours people with ALS and their caregivers receive a lot of information that is critical to the care and quality of life for people with ALS. However, this information can be difficult to remember given the large amount of information that is conveyed. The current standard for providing take-home information about the visit is to provide patients with a written after-visit summary and access to their doctor's notes about the visit, typically through the patient portal. This study tests whether providing participants with video recordings of their MDC visits improves their quality of life and the quality of life of their caregivers. The study will enroll 400 pairs of people with ALS and their caregivers from eight different sites in the United States. Half of the participants in the study will receive their after-visit summary notes (the NOTES condition) and the other half of the participants will receive both their summary notes, but will also receive video recordings of their MDC visits that they can watch on their own at home (the VIDEO condition). The study will last for 12 months, with participants receiving NOTES or VIDEO at each of their regularly-scheduled MDCs during the 12 months. The study will test whether caregiver and patient participants in the VIDEO condition experience better quality of life than those in the NOTES condition at 1 month, 6 months, and 12 months from study enrollment. The results of this study will help determine what is the most effective approach to communicating MDC information to people with ALS and their caregivers.

Interventions

Video recording (Behavioral)
We will video record participants' multidisciplinary clinic (MDC) visits for 12 months. Participants will access the videos in HealthPAL, an NIH-funded, HIPAA-compliant personal health library developed with older adults and caregivers, available in Spanish and English. Each specialist visited with during the MDC will have a 'chapter' in HealthPAL that can be reviewed online at home by participants. Participants will receive orientation and training on both their patient portal and HealthPAL, including how to review and share their recordings using a take-home manual (an instructions video is also available in HealthPAL).
Notes Instruction (Behavioral)
Participants will be given instruction on how to view their after-visit summaries and doctors' notes in their patient portal, as well as how to give other trusted family members or friends access to their visit notes.

Eligibility criteria

Inclusion Criteria for People with ALS: * Diagnosis of ALS by either El- Escorial or Gold Coast Criteria * ≥18 years of age * Plan to attend MDC visits for 12 months * Speak English or Spanish * Presence of a caregiver (defined as someone who assists with care) who is also participating in the VITALS trial * Projected life expectancy of at least 12 months as determined by the site investigator. Exclusion Criteria for People with ALS: * Unable or unwilling to provide informed consent or follow study procedures * Significant cognitive impairment, clinical dementia, or unstable psychiatric illness (including, but not limited to, psychosis, active suicidal ideation, suicide attempt, or untreated major depression) as determined by the site investigator * Current pregnancy based on participant self-report; * Unable to access the internet; * Do not have access to a personal or shared email and are not interested in creating a personal or shared email; * Do not wish to create a patient portal account, if they do not already have one; * Uncorrected hearing or visual impairment that would impair the ability to view video recordings; * Incarcerated. Inclusion Criteria for Caregivers: * Agree to their identified role as a caregiver of a patient with ALS participating in the VITALS trial; * Speak English or Spanish; * ≥18 years of age. Exclusion Criteria for Caregivers: * Unable or unwilling to provide consent or follow study procedures; * Unable to access the internet; * Do not have access to a personal or shared email and are not interested in creating a personal or shared email; * Uncorrected hearing or visual impairment; * Professional caregiver for the patient; * Incarcerated.

Conditions

Amyotrophic Lateral Sclerosis (ALS)

Locations

Mayo Clinic Scottsdale — Scottsdale, Arizona, United States
Mayo Clinic Jacksonville — Jacksonville, Florida, United States
Massachusetts General Hospital — Boston, Massachusetts, United States
Dartmouth-Hitchcock Health — Lebanon, New Hampshire, United States
Penn State Health Milton S. Hersey Medical Center — Hershey, Pennsylvania, United States
University of Pittsburgh Medical Center — Pittsburgh, Pennsylvania, United States
University of Wisconsin Health — Madison, Wisconsin, United States

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Official Source

Data sourced from ClinicalTrials.gov, a service of the U.S. National Institutes of Health.

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