JMIR Publications

ABSTRACT

Background:

Multidisciplinary clinics (MDCs) provide benefits to patients and their caregivers, but visits are information heavy and can last four hours. There are questions about the effectiveness of current methods of sharing information from MDCs with patients.

Objective:

: The objective of this trial is to determine the feasibility and acceptability of sharing information via video recordings of amyotrophic lateral sclerosis MDCs with patients and caregivers.

Methods:

Randomized, controlled pilot trial with 3 months of follow-up from April 2021 – March 2022 in a rural multidisciplinary neurology clinic. Patients with amyotrophic lateral sclerosis, their caregivers, and their clinicians were recruited. Patients and their caregivers were randomized to either receive their normal after-visit summary (TAU), or to receive their normal after-visit summary and a video recording of their multidisciplinary clinic visit (VIDEO). Each specialist visit had its own recording and was accessible by patients and caregivers using a secure online platform called HealthPAL over a three-month follow-up period. Primary study outcomes were feasibility and acceptability of the video intervention measured by recruitment rate (target: 70%), percentage of participants watching videos (target: 75%), and the Feasibility of Intervention Measure and Acceptability of Intervention Measure (targets: 3/5). We hypothesized that video recording would be feasible and acceptable to patients and their caregivers.

Results:

Of 30 patients approached, 24 were recruited, while all family caregivers (n=20), and clinicians (n=34) approached were recruited. A total of 144 specialist visits were recorded, approximately 12 specialist visits at a median of one multidisciplinary clinic visit per patient. Of recorded patients, 9 out of 12 (75%) viewed videos. High median intervention feasibility (4.00; SD 0.99) and acceptability (4.00; SD 1.22) of intervention measures were reported by patients and caregivers in the intervention arm. High median intervention feasibility (5.00; SD 0.21) and acceptability (4.88; SD 0.40) were reported by clinicians. Of the 24 patients, 12 (50%) did not complete 3-month follow-up primarily due to death (n=10).

Conclusions:

Video recording is highly feasible and acceptable for patients, caregivers, and clinicians at a rural amyotrophic lateral sclerosis clinic. Our level of attrition is a useful benchmark for future studies in multidisciplinary clinic populations. Despite high rates of patient death, 1-week assessments highlight the value of recordings for both patients and caregivers. Clinical Trial: This trial was registered on clinicaltrials.gov (ID NCT04719403) in 01/2021.