JMIR FORMATIVE RESEARCH

Bratches et al

Original Paper

The Feasibility and Acceptability of Sharing Video Recordings ofAmyotrophic Lateral Sclerosis Clinical Encounters With Patientsand Their Caregivers: Pilot Randomized Clinical Trial
Reed W R Bratches1, PhD; Jeffrey Cohen2, MD; Elizabeth Carpenter-Song2, PhD; Lisa Mistler2, MD; Paul J Barr2,
PhD
1

School of Nursing, University of Alabama at Birmingham, Birmingham, AL, United States

2

Dartmouth College, Hanover, NH, United States

Corresponding Author:
Reed W R Bratches, PhD
School of Nursing
University of Alabama at Birmingham
1720 University Boulevard
Birmingham, AL, 35222
United States
Phone: 1 2059316655
Email: rbratches@gmail.com

Abstract
Background: Multidisciplinary clinics (MDCs) provide benefits to patients with amyotrophic lateral sclerosis (ALS) and theircaregivers, but MDC visits are information-heavy and can last 4 hours, with patients and caregivers meeting with multiple
specialists within each MDC visit. There are questions about the effectiveness of current methods of sharing information from
MDCs with patients. Video recordings are a promising new method of sharing information that may allow patients and caregivers
to revisit the MDC and remind them of clinical recommendations and conversations.
Objective: The objective of this trial is to determine the feasibility and acceptability of sharing information through video
recordings of ALS MDC visits with patients and caregivers.
Methods: This study was a randomized, controlled pilot trial with 3 months of follow-up from April 2021 to March 2022 in arural multidisciplinary neurology clinic. We recruited patients with ALS, their caregivers, and their clinicians. Patients and theircaregivers were randomized to either receive their normal after-visit summary (treatment as usual) or to receive their normal
after-visit summary and a video recording of their MDC visit (video). Each specialist visit had its own recording and was accessible
by patients and caregivers using a secure web-based platform called HealthPAL over a 3-month follow-up period. Primary study
outcomes were feasibility and acceptability of the video intervention measured by recruitment rate (target: 70%), percentage ofparticipants 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 the 30 patients approached, 24 were recruited, while all caregivers (n=21) and clinicians (n=34) approached wererecruited. A total of 144 specialist visits were recorded, approximately 12 specialist visits at a median of one MDC visit per
patient. Of the recorded patients, 75% (9/12) viewed videos. High median intervention feasibility (4, SD 0.99) and acceptability(4, SD 1.22) of intervention measures were reported by patients and caregivers in the intervention arm. High median intervention
feasibility (5, SD 0.21) and acceptability (4.88, SD 0.4) were reported by clinicians. Of the 24 patients, 50% (n=12) did notcomplete a 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 ALS clinic.
Our level of attrition is a useful benchmark for future studies in MDC populations. Despite high rates of patient death, 1-weekassessments highlight the value of recordings for both patients and caregivers.
Trial Registration: ClinicalTrials.gov NCT04719403; https://clinicaltrials.gov/study/NCT04719403(JMIR Form Res 2024;8:e57519) doi: 10.2196/57519

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KEYWORDS
feasibility; acceptability; amyotrophic lateral sclerosis; digital intervention; ALS; video recording

Introduction
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative
disorder causing progressive loss of motor functioning, typicallyleading to death within 5 years of symptom onset [1-3]. Patientsand their caregivers require information from multiple clinicalspecialties to guide treatment plans involving interrelated aspectsof their disease [4]. Multidisciplinary clinics (MDCs) where
patients meet with up to 12 specialists sequentially during a 3to 4-hour visit are the gold-standard approach to caremanagement [5]. Given the duration and complexity of MDC
visits, less than 40% of treatment recommendations are recalledby patients [6,7]. This also impacts caregivers who report stresswhen they do not have enough information about managing thepatient’s condition [8,9].
MDCs currently provide patients with brief, written after-visit
summaries (AVSs) of their treatment plan from each specialist,
yet the AVSs are not comprehensive and are typically written
in ways that are not easily understood by patients [10,11].
Sharing video recordings of clinic visits is an innovative strategy
that may assist with addressing this knowledge gap by providing
a more detailed and accurate record than memory alone [12].
While not studied in ALS, access to visit recordings has been
linked to better self-management and treatment adherence inother chronic conditions [13].
We conducted a randomized controlled pilot trial to determine
the feasibility and acceptability of video recording in an ALS
MDC setting. By understanding whether recordings are feasibleor acceptable, the results of this pilot study will help determine
whether these modalities have potential for future study. Thesefindings will inform the development of future trials that areinclusive of patients with ALS and their caregivers, which may
help facilitate recall and understanding of visit information.

Participants
Clinic Staff
Clinical staff were recruited in January 2021 during a pre-MDC
team meeting; we aimed to recruit, consent, and survey allclinicians, though not all clinicians attended every MDC visit
or met with each patient.

Patients and Caregivers
We included patients aged ≥18 years who communicated in
English, were able to use a computer to access recordings, andwere primarily treated for ALS. Caregivers, aged ≥18 years,
were identified by patients as a family member or friend who
assists with their health and health care. Patients were sent lettersdescribing the research project 3 weeks before their visit andgiven the opportunity to opt out. Between 7 and 10 days before
their visit, potential patients (and their caregivers) were
contacted by telephone to determine their interest and eligibility.
Eligible patients and caregivers could complete consent
in-person or remotely. Post consent, patients completed abaseline assessment and were then randomly allocated to thetreatment as usual (TAU) arm or video arm.

TAU Arm
In the TAU arm, patients and their caregivers met with clinicians
as normal, with no change to clinic procedures.

Audio or Video Intervention

We conducted a randomized controlled pilot trial. Participants
were allocated to receive their usual AVS or their usual AVS
plus video recording of their ALS MDC visit (video) on a 1:1
ratio using variable block randomization with block sizes of 4
and 2. The randomization sequence was produced
programmatically in R (version 3.4; R Core Team) by RWRB,
and participants were randomly assigned upon completion of
the baseline assessment.

All MDC visits during the 3-month study period for eachparticipant in the video arm were recorded on a Canon Vixia
camcorder and RØDE microphone. Patients accessed theirrecordings through HealthPal. HealthPAL is an National
Institutes of Health–funded, open-source, HIPAA (Health
Insurance Portability and Accountability Act)–compliant clinic
visit recording, storage, and sharing platform developed by amember of the research team, Barr et al [6] at DartmouthCollege [14]. The intervention underwent no changes during
the trial. The camera was set up to capture the clinical encounterin-frame, including the patient, caregiver, and clinician orclinicians. A secure, password-protected HealthPAL account
was created for each patient that could be accessed within 48
hours of the clinic visit. In HealthPAL, each clinician visit waslabeled by clinician, clinician specialty, and date to allow easiernavigation of the MDC recording. Though not required in our
protocol, recordings could be shared with caregivers by thepatient inviting the caregiver to create their own account or bywatching the videos on the patient’s account.

Setting

Study Procedures

Participants were recruited from the Dartmouth Health Heater
Road clinic. The MDC occurred each month, with cliniciansrotating between rooms based on a preset clinician schedulewith visit times approximating 30-40 minutes.

At the clinic, a research associate managed the recording
procedure, including setting up and turning on and off therecording device. Within 2 days of the visit, patients would
receive an email directing them to HealthPAL to access theirrecordings. Participants completed web-based follow-up surveys
and interviews at 1-week and 3-month interval to explore factors
related to the feasibility of our research protocol and theacceptability of recording. Participating patients received an

Methods
Designhttps://formative.jmir.org/2024/1/e57519

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honorarium of US $20 for completing each assessment and US$30 for completing the poststudy qualitative interview.

conducted at the 3-month timepoint due to attrition. All analyses
and the randomization sequence were conducted using R.

Patient and Caregiver Interviews

Qualitative Analysis

Patients and caregivers in the video arm were invited tocomplete semistructured interviews informed by theConsolidated Framework for Implementation Research to better
understand how they used the video recordings, barriers andfacilitators to recording implementation, and the impact of therecording on clinic visit interactions (Multimedia Appendix 1)[15]. Participants were given the option to receive an email
containing questions from the interview guide; this option was
implemented in response to participant functional limitations,as ALS disease progression precludes many patients fromspeaking effectively [16]. Follow-up surveys and interviews
were completed by RWRB, a male researcher with qualitative
methods training, and transcripts were audio-transcribed using
TranscribeMe.

RWRB performed directed qualitative content analysis of theinterview transcripts using a codebook consisting of a priori
domains, including attitudes and behaviors related to recordinguse, sharing recordings, and the impact of recordings on clinic
visits [20]. Transcripts were reviewed and coded by RWRB.
Coded transcripts were audited by LM to assess alignment oftext excerpts with the attached code. Disagreements wereresolved by PJB. Text excerpts were aggregated by code; code
reports were reviewed for prominent and salient patterns todevelop themes. Field notes from RWRB were also analyzed
in the qualitative analysis.

Clinician Surveys
At the conclusion of the project, a 6-question follow-up survey
was distributed to all regular clinic staff at preclinic meetings
to assess the feasibility, acceptability, and appropriateness ofvideo and open-ended questions to identify challenges associatedwith recording and their potential effects on practice style andpatient encounters [17].

Outcomes
The primary outcome measures were the feasibility andacceptability of recording. We used 2 validated surveys, theFeasibility of Intervention Measure and Acceptability ofIntervention Measure [17]. We prespecified a target medianFeasibility of Intervention Measure and Acceptability ofIntervention Measure of ≥3 out of 5 based on publishedthresholds to indicate feasibility or acceptability [17]. We also
assessed acceptability and feasibility based on the actual reviewof the video recordings. Based on previous guidelines, we
determined that a 70% or higher viewing rate would indicate
high feasibility and acceptability [18]. We collected preliminary
data on patient and caregiver behavioral and health-related
outcomes, including anxiety, depression, and adherence toexercise and medications, using validated patient-reported
surveys.

Analysis
We aimed to recruit a sample of 24 patients and at least 12
caregivers, as 10-30 participants is adequate to detect feasibility
issues and gather preliminary quantitative outcome data [19].

Quantitative Analysis
In the process of determining feasibility and acceptability, we
collected exploratory outcome data to determine whether
participants would complete baseline and follow-up surveys.
We present the results of tests of differences using theMann-Whitney U test between the intervention and TAU ateach timepoint and the results of a repeated-measures ANOVA
between baseline and 1 week. Repeated measures were nothttps://formative.jmir.org/2024/1/e57519

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Ethical Considerations
This study received ethical approval from the Dartmouth HealthInstitutional Review Board (02000798) and was registered on
ClinicalTrials.gov (NCT04719403) in January 2021.
Recruitment began in April 2021 and continued through March
2022. Participants were consented to according to Dartmouth
Health protocols and were given paper and electronic copies ofconsent forms for review. Data collection concluded in June
2022. Deidentified data are stored on protected and secured
hard drives at Dartmouth College. This study adhered to the
CONSORT (Consolidated Standards of Reporting Trials)
extension for pilot trials (Multimedia Appendix 2) [15].

Results
Overview
All clinicians at the MDC agreed to take part, including theregularly scheduled staff (n=14) as well as rotating residents,
fellows, and ad hoc specialists (total clinicians n=34). We
approached 30 patients to meet our targeted sample of 24
participants (80% recruitment rate; 22 through e-consent and 2
through in-person consent; CONSORT flow diagram,Multimedia Appendix 2). In TAU, demographic informationfor 2 patients was unavailable: one patient entered hospice carebefore their first visit, while another did not receive thedemographic questionnaire. About 65% (14/22) were malepatients with a median age of 66.5 years (Table 1). Of the 12
participants in the intervention arm, study assessments werecompleted by 11 at 1 week and 7 participants at 3 months. Of
the 12 participants in TAU, study assessments were completed
by 9 at 1 week and by 5 participants at 3 months. Moreinformation is given in Multimedia Appendix 2. Attrition was
primarily due to death (n=6 in TAU and n=4 in the interventionarm), while one patient was dissatisfied with their allocation to
TAU and one newly diagnosed patient withdrew to focus on
managing their condition. We recruited 100% of caregivers
approached (n=21 caregivers), with 12 in the intervention arm
and 9 in TAU. About 70% (14/21) were female caregivers, witha median age of 58.5 years (Table 1). After patients passed
away, caregivers were not contacted further.

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Table 1. Patient and caregiver characteristics by intervention.
Characteristics

Patients

Caregivers

Video (n=12)

TAUa (n=11)

Total (n=22)

Video (n=12)

TAU (n=9)

Total (n=21)

Mean (SD)63.67 (14.71)

64.8 (9.93)

64.182 (12.489)

64.2 (10.5)

55 (5)

60.1 (9.5)

Range

30-81

52-79

30-81

46-80

46-63

46-80

Women

4 (33)

4 (40)

8 (36)

7 (64)

7 (78)

14 (70)Men

8 (67)

6 (60)

14 (64)4 (36)

2 (22)

6 (30)<50,000

3 (27)

4 (40)

7 (33)

2 (18)

3 (33)

5 (25)

50,000-99,999

5 (46)

4 (40)

9 (43)

6 (55)

2 (22)

8 (40)>100,000

3 (27)

2 (20)

5 (24)

3 (27)

4 (44)

7 (35)

Less than college

3 (25)

4 (40)

7 (32)

6 (55)

5 (56)

11 (55)

College degree

4 (33)

3 (30)

7 (32)

3 (27)0 (0)3 (15)

More than college

5 (42)

3 (30)

8 (36)

2 (18)

4 (44)

6 (30)

Not high

6 (50)

6 (60)

12 (56)2 (18)

1 (13)

3 (14)

High

6 (50)

4 (40)

10 (46)9 (82)

7 (88)

16 (84)Age (years)

Gender, n (%)

Income (US $), n (%)

Education, n (%)

Literacy level, n (%)

a

TAU: treatment as usual.

Visit Recordings
A total of 144 unique encounters with clinicians were recorded,
for approximately 12 recordings per patient in the intervention
arm. Of patients receiving recordings, 75% (9/12) viewed atleast one video, with an average of 6 videos viewed each. One
participant did not think they required videos, one patient did
not want to watch the videos, and one patient’s condition
progressed quickly, and they did not feel the videos wererelevant. Of the 55 videos watched, 36% (n=20) were inneurology, and 29% (n=16) were in physical and occupational
therapy. Of note, 3 caregivers continued watching videos after
patients had passed away.

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Quantitative Results
Mean intervention feasibility (4, range 2-5, 95% CI 3.05-4.7)
and acceptability (4, range 2-5, 95% CI 2.79-4.83) ofintervention measures were reported by patients in theintervention arm. While not statistically significant, the videoarm performed better in adherence to refills and medications,
adherence to exercise, caregiver burden, and caregiver
preparedness at 1 week compared to TAU (Table 2). All 14
regularly scheduled clinicians at the MDC responded to thesurvey. Mean intervention feasibility (5, range 3-5) andacceptability (4.5, range 3-5) were reported at the conclusionof the trial.

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Table 2. Study outcome measures by intervention arm at baseline, 1 week, and 3 months (t tests).
Measures

Baseline

1-week3-months

Video, mean

7.75

7.64

8.29

Control, mean

6.73

6.7

5.7

P value

.19

.29

.23

95% CIs–0.58 to 2.62

–0.92 to 2.86

–2.83 to 7.75

Video, mean

24.67

25.27

25.67

Control, mean

24.55

24.3

25

P value

.86

.06

.48

95% CIs–1.32 to 1.56

–0.02 to 1.90

–3.96 to 2.37

Video, mean

10

11.82

10.42

Control, mean

10.27

10.22

10

P value

.80

.11

.56

95% CIs

–2.55 to 2.01

–0.42 to 3.61

–4.13 to 6.38

Video, mean

4

—a

4.28

Control, mean

5

—

2

P value

.61

—

.33

95% CIs–5.03 to 3.03—

–2.3 to 5.8

Video, mean

6

—

6.375

Control, mean

5.8

—

3

P value

.92

—

.19

95% CIs–3.62 to 3.98—

–2.06 to 8.81

Video, mean

18.33

18.81

21.67

Control, mean

24.87

25.14

24.25

P value

.04

.01

.48

95% CIs–12.71 to –0.38–10.69 to –1.96–10.7 to –5.54

Video, mean

18.33

19.27

18.5

Control, mean

17.5

17.85

20.25

P value

.77

.7

.69

95% CIs–5.08 to 6.75

–6.33 to 9.17

–11.85 to 8.34

Video, mean

4.58

4.36

4

Control, mean

11.13

6.43

7

P value

.04

.41

.41

95% CIs–12.55 to –0.53–7.39 to 3.26

–12.31 to 6.31

Patient outcomes
Patient Satisfaction Questionnaire-18 [21]Adherence to refills and medications-7 [22]Exercise Adherence Rating Scale [23]General Anxiety Disorder-7 [24]Patient Health Questionnaire-8 [25]Caregiver outcomes
Burden Scale for Family Caregivers [26]Preparedness for Caregiving Scale [27]

Caregiver General Anxiety Disorder-7 [24]https://formative.jmir.org/2024/1/e57519

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Measures

Bratches et alBaseline

1-week3-months

Video, mean

3.41

3.81

4.83

Control, mean

9.63

6.71

4.75

P value

.02

.17

.98

95% CIs–11.11 to –1.3

–7.29 to 1.49

–6.59 to 6.75

Caregiver Patient Health Questionnaire-8 [25]aNot applicable.

Qualitative Results
We received responses from 6 patient-caregiver dyads after
reaching out to 8 dyads for interest in completing an interview,
resulting in 2 interviews lasting approximately 20 minutes and4 written responses. All 14 regularly scheduled clinicians
completed the clinician survey. Clinicians did not report
detrimental effects of visit recordings or study procedures onpatient visits. Some clinicians perceived a greater sense ofaccountability and awareness of their actions during the recorded
visits, though clinicians thought this was beneficial and should
be replicated in their nonrecorded visits. Clinicians also
expressed a desire to view the recordings for their own clinicalimprovements.
The qualitative analysis yielded 3 primary themes in relation
to recording use, sharing recordings, and the impact of recording
on clinic visits. Refer to Table 3 for full qualitative results andillustrative quotes.

Table 3. Qualitative analytic domains, quotes numbers, and quotes.
Domain and quote number

Quote

Recording use
1

You get old and you forget, but you have the ability to go back to the video and say, “Oh, that’s what (the doctor)
meant.” (Patient)

2

Watching, I was like “I don’t remember them saying that. Boy I’m glad I watched because I didn’t write it down when
I take notes, and I didn’t remember it.” (Caregiver)3

Oh my goodness, I didn’t focus on that while I was there...Person number 1 was talking and person number 2 had aninterjection that was helpful, but I didn’t pick up on it. So the video actually brought that to light, which was fantastic.
(Caregiver)4

To remind myself how the appointments went so that I could formulate some questions I might ask at the second appointment. It kind of refreshed my mind about what we had talked about and what questions I had now that may havechanged over three months. (Patient)

Sharing recordings
5

The drawback (of recordings) for me was seeing myself and noticed (sic) I had declined! L Pertaining to my looks,
and speech problems! That was not a bad thing, because I already knew the decline! It was important to me to know
and observe the progress of my ALS! (Patient)6

I have a tendency to just kind of go through and deny stuff or not always say when I was comfortable. I was pretty
honest at the clinic visits, so (my caregiver) gets to hear the honest me communicating as well as, “Oh, hey, have you
been doing those exercises they told you to do in PT?” (Patient)7

I have a friend who was very interested in going to some clinic visits with me...I was able to tell her, “No, you don’t
need to spend four hours of your time coming to clinic. If you want to, we can review these video tapes.” (Patient)8

But as time goes on, it might be really helpful for some of my good friends to understand more about what’s happening
with me. They’re very important members of my care team. (Patient)

Impact on clinic visits
9

Didn’t have any impact on my care. (Patient)

10

Quick and Easy. Low impact on doctor visits. (Caregiver)11

Oh, I don’t think (recording) - I don’t think (recording) affected (the visit) at all. I think we were tuned in to each
person that came in to talk to (us), and we focused on what was being said. I don’t think either of us paid much attention
to the fact you’re recording it at all...It didn’t take away from the visit. (Caregiver)

12

It’s hard for me to write...and taking notes kind of distracts me while I’m interacting. So it was very helpful for me
not to have to take notes once I realized that I’d be able to just look at the video tapes later on. (Patient)https://formative.jmir.org/2024/1/e57519

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Recording Use
Participants used recordings to augment clinical encounters andmonitor their condition. One patient said, “You get old, and you
forget, but you have the ability to go back to the video and say,‘Oh, that’s what (the doctor) meant.”
Visits often occurred every 3 months, and participants found it
useful to revisit material when planning for their next visit.
To remind myself how the appointments went so that
I could formulate some questions I might ask at thesecond appointment. It kind of refreshed my mind
about what we had talked about and what questions
I had now that may have changed over three months.
[Patient]
Participants also used the recordings to assess the progressionof their condition. They found it useful to see themselves rather
than just rely on how they were feeling. This was echoed byanother participant, who said that the video “kept them honest”
when communicating about their condition with their caregivers
and physical therapists.
I have a tendency to just kind of go through and deny
stuff or not always say when I was comfortable. I was
pretty honest at the clinic visits, so (my caregiver)gets to hear the honest me communicating as well as,‘Oh, hey, have you been doing those exercises they
told you to do in PT?’ [Patient]

Sharing Recordings
Sharing recordings supported patient independence andfacilitated updates to family and friends. Recordings were shared
to engage family members and friends who could not attend
visits. They were used to keep family members informed andengaged with the visits; indeed, one patient was scheduled off
the waitlist and their caregiver could not attend, but the patientchose to attend the visit alone, with the knowledge that theircaregiver would receive the information they needed from thevideos; without the video, the patient would not have elected
to attend the clinic.
I have a friend who was very interested in going tosome clinic visits with me...I was able to tell her, ‘No,
you don’t need to spend four hours of your timecoming to clinic. If you want to, we can review thesevideo tapes.’ [Patient]

Impact of Recording on Clinic Visits
Clinical workflow and interactions were not reported to be
impacted by recording. All participants mentioned they foundno detrimental impact of video recordings on clinic visit
interactions. Participants mentioned the positive effects ofrecording, with one participant mentioning that the ability towatch the recording instead of taking notes allowed them to beless distracted during the visit and focus on interacting withclinicians.
Oh, I don’t think (recording)-I don’t think (recording)affected (the visit) at all. I think we were tuned in toeach person that came in to talk to (us), and we
focused on what was being said. I don’t think either
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Bratches et alof us paid much attention to the fact you’re recording
it at all...It didn’t take away from the visit. [Caregiver]

Discussion
Principal Findings
In our sample, patients, caregivers, and clinicians found video
recording to be highly acceptable and feasible to implement at
ALS MDCs. While we experienced attrition, we foundrecordings were used by patients and their caregivers toremember what was said in visits and to share information fromvisits with family members.

Limitations
While we experienced high attrition, this was an acceptable risk
when designed the pilot project. Patients with advanced ALS
are often excluded from research [28], often to protect
researchers from attrition, despite the potential for interventions
to provide benefit. In this case, we decided video recordings,
which focus on communication, could be valuable to patientsat any stage of disease. While we did not capture time sincediagnosis, this information could be an important moderator to
future use of clinic visit recordings. Additionally, our pilot trial
adds an important contribution to the field by identifying thelevel of attrition one can expect when including patients withadvanced ALS in order to inform sample size estimates for
future efficacy trials. The high attrition rate of our participants,
particularly at 3-month follow-up, is a limitation for ourquantitative analysis. However, this study is a pilot that seeks
to understand how to design a larger trial and addresses a gap
in current ALS research where patients with more advanced
disease are often excluded from trials [28]. This trial occurred
at a single site at a rural MDC; future trials should include
clinics in urban environments to determine whether our positive
findings may be generalizable. Despite the rural setting of the
MDC, none of our patients or caregivers reported problems
accessing or viewing the videos, indicating they had reasonably
strong broadband internet connections. Further work is needed
to determine potential solutions to sharing video recordings ofclinic visits with those who may not have robust internet
connections.
We chose not to mask at this stage as the trial was pilot basedin nature and not focused on efficacy. Because patients all choseto watch videos with caregivers, we do not know whether
patients or caregivers initiated the viewing or what proportionof video views were initiated by patients or caregivers. While
we received 6 responses to 8 requests for qualitative interviews,
it is unknown whether the experiences of the 2 who did not
respond may have differed from those who did.

Comparison With Previous Work
Providing video recordings to patients is a promising methodof providing information from clinic visits to patients andcaregivers that has been well received in disciplines such as
oncology, pediatrics, cardiac surgery, and orthopedic surgery[29]. Our results are similar to those from other fields, indicatingthat video recording is highly feasible and acceptable for patientswith ALS and their caregivers at MDCs. In our sample, video
recordings helped overcome the limitations of other methods
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of communicating visit information by offering a record of what
was said without patients or caregivers needing to rely on
imperfect recall or notes, and they showed the clinician’s best
attempt to communicate the information rather than written
medical jargon [30,31].
Adherence to exercise and medication is important in the
management of chronic disease and is connected to improved
outcomes in patients with ALS [2,32]. The pilot was notdesigned to detect statistically significant differences, though
results were promising for both adherence to medications andadherence to exercise in the video arm—similar to the use ofrecordings in other fields [33]. This is supported by the video
usage statistics, where neurology visits (medications are
discussed) and physical and occupational therapy visits(exercises are discussed) were the most-watched specialties.
Our qualitative findings also highlight the potential value ofvideo for exercise adherence in patients with ALS and theircaregivers, with patients and caregivers noting to the research
assistant the utility of seeing the exercise demonstrated on
camera.
Despite the benefits of ALS MDCs, the length of visits andamount of information exchanged have been described asburdensome [34]. Our findings indicate that video recordings
could make these visits easier. Both patients and caregivers
found that having a recording lessened the note-taking burden
because the recording functioned as a perfect record of the visit.
By reducing “patient work” in visits, patients and caregivers
could be more engaged with their clinicians during visits when
they have videos to watch later; further work could understandthe impact of recordings on communication in clinic visits. The
visit may also be of higher quality—clinicians reported a greater
sense of accountability, supporting findings from a systematic
review of visit recording [35].
Caregivers of patients with ALS have reported strain associatedwith feeling less supported by the care team [8]. A scoping
review of 33 recording studies found that while patients often
shared recordings with caregivers, caregivers were rarely

Bratches et al
enrolled in the studies, and thus their experience with recording
and its impact on outcomes are not well documented [29]. We
found caregivers were enthusiastic about the recordings andused them to assist their caregiving, which could be supporting
the pathway where a better understanding of treatment anddiagnosis leads to improved caregiver performance [36].
Future work could explore the impacts of recording on caregiver
outcomes identified in the scoping review, including resilienceand coping. The utility of clinic visit recordings as mementos
or their effects on bereavement is similarly less understood;
videos have been identified as valuable by caregivers after
patients have passed away, but the identified videos included
home movies and personal videos rather than those occurringin a medical encounter [37].

Implications
With significant developments in recording technology andusage practices, video-recorded clinic data can assist patientand caregiver management and, by extension, improve healthoutcomes. While other methods of visit communication may
be inadequate for patients with ALS and their caregivers becauseof low visit recall and jargon-heavy summaries [38], video
recordings provide a feasible alternative, especially when taken
in conjunction with natural language processing algorithms tofacilitate understanding. These results lay a foundation that
could change the way information is communicated for patientswith ALS and their caregivers at the 73 American ALS MDCs.
Video recordings could help address issues associated with longor strenuous visits by reducing the burden of documentation on
patients, caregivers, and clinicians.

Conclusions
Our results indicate that recording interventions is feasible andacceptable in our sample of patients, caregivers, and clinicians
at a multidisciplinary ALS clinic. A larger-scale trial withflexible follow-up assessment is required to further explore theclinical utility of recordings. As recording technology is refined,recordings could have great utility for patients, their caregivers,
and the clinical team.

Acknowledgments
We would like to acknowledge the staff of the multidisciplinary clinic, and especially the patients and their families, for theirtime and commitment to participating in research that can help others. The study team would like to gratefully acknowledge thefinancial support of the Diamond Endowment at the Dartmouth-Hitchcock Department of Neurology.

Data Availability
The data sets and analyses generated during the study are available from the corresponding author upon reasonable request.

Authors' Contributions
RWRB contributed to managing the trial, led the analysis of quantitative and qualitative data and drafted the manuscript. JC
contributed to securing funding, the interpretation and clinical context of the results and editing of the manuscript. ECS contributed
to the quantitative analysis and editing the manuscript. LM contributed to the quantitative analysis and editing of the manuscript.
PJB contributed to securing funding, to the quantitative and qualitative data, and to drafting and editing the manuscript.

Conflicts of Interest
None declared.

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Bratches et alMultimedia Appendix 1
Interview guide.
[PDF File (Adobe PDF File), 40 KB-Multimedia Appendix 1]

Multimedia Appendix 2
Participant flow diagram.
[DOCX File , 62 KB-Multimedia Appendix 2]

Multimedia Appendix 3
CONSORT-eHEALTH checklist (V 1.6.1).
[PDF File (Adobe PDF File), 90 KB-Multimedia Appendix 3]

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Abbreviations
ALS: amyotrophic lateral sclerosis
AVS: after-visit summary
CONSORT: Consolidated Standards of Reporting Trials
HIPAA: Health Insurance Portability and Accountability Act
MDC: multidisciplinary clinic
TAU: treatment as usual

Edited by A Mavragani; submitted 19.02.24; peer-reviewed by J Parkin Kullmann, RD Reed; comments to author 24.04.24; revised
version received 29.04.24; accepted 10.05.24; published 26.06.24
Please cite as:
Bratches RWR, Cohen J, Carpenter-Song E, Mistler L, Barr PJ
The Feasibility and Acceptability of Sharing Video Recordings of Amyotrophic Lateral Sclerosis Clinical Encounters With Patientsand Their Caregivers: Pilot Randomized Clinical Trial
JMIR Form Res 2024;8:e57519
URL: https://formative.jmir.org/2024/1/e57519
doi: 10.2196/57519
PMID:©Reed W R Bratches, Jeffrey Cohen, Elizabeth Carpenter-Song, Lisa Mistler, Paul J Barr. Originally published in JMIR Formative
Research (https://formative.jmir.org), 26.06.2024. This is an open-access article distributed under the terms of the Creative
Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The
complete bibliographic information, a link to the original publication on https://formative.jmir.org, as well as this copyright andlicense information must be included.

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