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

Summary

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.

Conditions

• Amyotrophic Lateral Sclerosis (ALS)

Interventions

BEHAVIORAL

Video recording

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).

BEHAVIORAL

Notes Instruction

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.

Sponsors & Collaborators

• Patient-Centered Outcomes Research Institute

  collaborator OTHER

• Massachusetts General Hospital

  collaborator OTHER

• Dartmouth-Hitchcock Medical Center

  collaborator OTHER

• University of Pittsburgh Medical Center

  collaborator OTHER

• Penn State Health Milton S Hershey Medical Center

  collaborator OTHER

• University of Wisconsin, Madison

  collaborator OTHER

• Mayo Clinic

  collaborator OTHER

• Trustees of Dartmouth College

  lead OTHER

Principal Investigators

• Paul J Barr, PhD · Dartmouth College

• Suma Babu, MD · Massachusetts General Hospital

Study Design

Allocation

RANDOMIZED

Purpose

OTHER

Masking

SINGLE

Model

PARALLEL

Eligibility

Min Age

18 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2026-06-01

Primary Completion

2029-09-01

Completion

2029-10-01

Countries

• United States

Study Locations