Funding Source
Diamond Research Development Award, Diamond Endowment Program at Geisel School of Medicine, Dartmouth College, Hanover, NH and Dartmouth-Hitchcock Medical Center, Lebanon, NH.
Project Period
10/01/2020 – 9/30/2022
Principal Investigator
Paul J. Barr, PhD (Dartmouth College); Jeffrey A. Cohen, MD (Dartmouth-Hitchock Medical Center)
Other Project Staff
Reed WR. Bratches, Will R. Haslett
Project Summary
Up to eighty percent of clinic visit information is lost immediately post visit. For Amyotrophic Lateral Sclerosis (ALS) patients who receive care at a Multidisciplinary ALS Clinic (MDC), current practice paradigms indicate a written After Visit Summary (AVS) be given to patients as a summary of their clinical encounter to promote recall and increase self-management. Patients, caregivers, and clinicians report problems with the AVS; it is difficult for patients and caregivers to understand, lacks relevant information, and is an imperfect record of the clinic visit. 61% of clinicians report that the AVS does not meet their needs. Audio/video recordings of MDC visits is a novel alternative that shows great promise for the ALS population. When patients receive visit recordings, 71% listen and 68% share it with a caregiver, resulting in greater recall. Despite its growing use, to date there is no research on the impact of recording and sharing clinic visits on patient self-management ability, health outcomes or healthcare utilization in ALS. The objective of this proposal is to conduct a pilot trial to determine the feasibility and acceptability of routine audio/video recording and sharing of MDC visits and explore the impact of adding an audio/video recording of MDC visits (VIDEO) to usual care (UC) in patients with ALS, compared to AVS alone. The specific aims are: Aim 1. Conduct a two-arm, parallel group, patient-randomized, blocked, controlled, pilot trial with 3-month follow up, to determine the feasibility and acceptability of sharing audio/video recordings of MDC visits (VIDEO) on self-management in adults with ALS, compared to Usual Care/UC; and Aim 2 Assess the acceptability of the study protocol and the use of audio/video recording of visits as part of care by conducting brief, semi-structured interviews with participating clinicians, patients, and caregivers. Applicants hypothesize that 1) the implementation of recording and study activities will be feasible and acceptable to all participants, and 2) compared to those receiving UC, patients randomized to also receive audio/video recordings of MDC visits will report greater self-management and engagement in decision-making, and 3) caregivers will report higher levels of preparedness to provide care at 3 months. This research is innovative because: i) it seeks to shift current clinical practice where visit information is provided via AVS, by adding audio/video recordings; ii) the routine provision of visit recordings over time moves beyond prior studies that focus on single recordings of specialty visits; and iii) increase generalizability of findings as patients with ALS and their caregivers, are normally excluded from trials. Findings from this project will inform the design of a large efficacy trial of audio/video recording in ALS. Long term, the results are expected to have a major positive impact as they will increase clinical understanding of the feasibility and acceptability of an intervention that stands to positively supplement how visit information is communicated to patients with ALS and their caregivers.
Public Health Relevance
Upon completion of this research, we will have demonstrated acceptability and feasibility of conducting a trial of audio/video recording in patients with ALS and their caregivers – expanding on our successful Diamond Foundation Mini-Grant. We will also have collected preliminary data on the impact of audio/video recording on self-management, health outcomes, and care utilization. This infrastructure and data will be used to support larger multi-site research that is powered to examine our primary hypothesis. Ultimately, this research will positively impact the neurological sciences research field by understanding how to enhance patient and caregiver communications and improve the lives of those affected by ALS.