Keywords:
Restless Legs Syndrome - YouTube - Information
Palavras-chave:
Síndrome das Pernas Inquietas - YouTube - Informação
INTRODUCTION
Restless leg syndrome (RLS) is characterized by an irresistible urge to move the legs
in rest. Subjects with RLS frequently have poor sleep quality, disturbed daytime productivity,
and cognitive problems[1]. About 5-10% of the general population are estimated to suffer from RLS[2]. Given the significant morbidity caused by RLS, clinicians are expected to provide
sufficient and satisfactory information to their patients regarding the etiology,
pathogenesis and the treatments of this disorder. However, many healthcare professionals
do not have sufficient time to give the required information to their patients concerning
RLS. Moreover, as a consequence of the considerable complexity and heterogeneity in
the etiology, symptoms, signs, and treatment of the RLS, even clinicians may have
misconceptions in the understanding of the etiology and treatment of the RLS, leading
to the patients seeking for additional information from various sources.
The internet is currently the primary source for medical information[3]. YouTube is the third most visited internet property globally and one of the most
popular source for internet-based medical information. YouTube allows easy and free
access to numerous videos associated with any kind of disorder. However, since the
videos are uploaded not only by health care providers or professionals but also by
users with little or no curation, the accuracy of the medical content accessed through
the YouTube is questionable. Previous studies on YouTube videos have revealed that
one-third to one-half of the videos regarding type II diabetes, retinopathy of prematurity,
peripheral neuropathy, and Parkinson’s disease provide misleading information[4],[5],[6],[7]. More importantly, videos with misleading content are more popular than videos with
reliable content[7].
Currently, no study has evaluated the information on RLS disseminated by YouTube videos.
The aim of this study was to assess the quality of information available on YouTube
regarding the epidemiology, risk factors, examination, pathogenesis, and the treatment
of RLS.
MATERIALS AND METHODS
Due to the fact that this study is an observational study and direct patient contact
is lacking, the study was exempted from Institutional Review Board approval. Between
December 10 and 16, 2019, a YouTube search was carried out on https://www.youtube.com
for videos pertaining to "restless leg syndrome" by using the keyword "restless leg
syndrome". The computer history and cookies were deleted before searching since they
can affect the search results. Given that users rarely go beyond the first few pages
of any search result, only videos from the first 10 pages (10 videos per page) were
screened. Consequently, the first 100 videos for this keyword were included in the
analyses. Videos that were not in English were excluded.
The videos were viewed independently by A.A. and M.U.A. Disagreements between the
two raters were resolved by M.D. The videos were divided into three categories as
follows: "useful" (contains scientifically accurate information regarding any aspect
of RLS), "misleading" (contains information that is incorrect or scientifically unproven),
or "patient experiences" (contains patients’ personal experiences rather than medical
information on RLS.)
The number of views, source of upload, video length, and the number of "likes" and
"dislikes" were collected for each video on December 16, 2019. Upload source was classified
into university hospitals, private hospitals/clinics, practitioners, individual users,
TV/social media, healthcare information websites, or advertisements. Each video was
assessed for the presence or absence of information for three content domains: epidemiology/risk
factors, pathogenesis, and treatment. Videos providing treatment content were assessed
for the presence or absence of information for pharmacologic treatment, non-pharmacologic
treatment, and surgical treatment. The overall quality of all videos was subjectively
graded using the global quality scale (GQS), a 5-point Likert scale, based on the
quality of information, the ease of use, and how useful the reviewer thought the video
would be to a patient[8].
Statistical analysis
All analyses were performed on SPSS v21 (SPSS Inc., Chicago, IL, USA). For the normality
check, the Shapiro-Wilk test was used. Data are given as mean±standard deviation or
median (minimum-maximum) for continuous variables with regard to the normality of
distribution for quantitative variables and frequency (percentage) for categorical
variables. Non-normally distributed variables were analyzed with Kruskal-Wallis test.
Tamhane’s T2 test was used for post hoc analysis of the non-normally distributed variables.
Normally distributed variables were analyzed with one-way ANOVA test. Tukey test was
used for post hoc analysis of the normally distributed variables. Pearson chi-square and Fisher's exact
tests were used for the analysis of the categorical variables. P<0.05 was accepted
as statistically significant result.
RESULTS
The first 100 videos from the first 10 pages (10 videos per page) were included in
the analysis. The characteristics of the included videos are presented in [Table 1]. The median GQS of useful videos was 3 (1-5). Of the videos, 39% were uploaded by
TV/social media accounts, whereas 18% by practitioners, 11% by private hospital/clinic,
and 9% by university hospitals. In addition, 13% of the videos were uploaded by healthcare
information websites, 2% were uploaded advertisement and 8% were uploaded by individual
users. The median video length for the included videos was 3.39 (0.11-85) minutes,
and the median views were 6,055 (32-2351490). Of all videos, 77% were classified as
useful, 16% were deemed misleading, and 7% were personal experiences. The median GQS
score of the useful videos were significantly higher than that of the misleading videos
and patient experience videos [4 (1-5), 2 (1-3), and 1 (1-3), respectively, p<0.001].
Of the videos, 78% were about the treatment options, and 83% of the treatment videos
provided information regarding the non-pharmacologic treatment options.
Table 1
General features of the videos included in the study.
|
Upload source
|
n=100
|
|
University hospital, n (%)
|
9 (9%)
|
|
Private hospital/clinic, n (%)
|
11 (11%)
|
|
Practitioner, n (%)
|
18 (18%)
|
|
Individual user, n (%)
|
8 (8%)
|
|
TV/social media, n (%)
|
39 (39%)
|
|
Healthcare information website, n (%)
|
13 (13%)
|
|
Advertisement, n (%)
|
2 (2%)
|
|
Median views, n (min–max)
|
6055 (32–2351490)
|
|
Median length, minutes (min–max)
|
3.39 (0.11–85)
|
|
Median likes, n (min–max)
|
38.5 (0–6539)
|
|
Median dislikes, n (min–max)
|
3.5 (0–372)
|
|
Median number of comments, n (min–max)
|
7 (0–2160)
|
|
Categorization
|
|
Useful, n (%)
|
77 (77%)
|
|
Misleading, n (%)
|
16 (16%)
|
|
Personal experience, n (%)
|
7 (7%)
|
|
Global Quality Scale score
|
|
1, n (%)
|
9 (9%)
|
|
2, n (%)
|
26 (26%)
|
|
3, n (%)
|
24 (24%)
|
|
4, n (%)
|
11 (11%)
|
|
5, n (%)
|
30 (30%)
|
|
Content
|
|
Epidemiology/risk factors, n (%)
|
21 (21 %)
|
|
Pathogenesis, n (%)
|
1 (1%)
|
|
Treatment, n (%)
|
34 (34%)
|
|
Epidemiology/risk factors+treatment, n (%)
|
35 (35%)
|
|
Pathogenesis+treatment, n (%)
|
3 (3%)
|
|
Epidemiology/risk factors + pathogenesis+treatment, n (%)
|
6 (6%)
|
|
Content of treatment videos
|
|
Pharmacologic treatment, n (%)
|
17 (21.8%)
|
|
Non-pharmacologic treatment, n (%)
|
41 (52.6%)
|
|
Pharmacologic+non-pharmacologic treatment, n (%)
|
19 (24.4%)
|
|
Surgical treatment, n (%)
|
1 (1.3%)
|
|
Content of non-pharmacologic treatment videos
|
|
Lifestyle changes, n (%)
|
8 (8%)
|
|
Yoga, n (%)
|
5 (5%)
|
|
Massage, n (%)
|
2 (2%)
|
|
Diet, n (%)
|
4 (4%)
|
|
Vitamin supplements, n (%)
|
8 (8%)
|
|
Radiofrequency, n (%)
|
1 (1%)
|
|
Acupuncture, n (%)
|
1 (1%)
|
|
Lifestyle changes+vitamin supplements, n (%)
|
9 (9%)
|
|
Device, n (%)
|
6 (6%)
|
|
Lifestyle changes+yoga+massage, n (%)
|
1 (1%)
|
|
Lifestyle changes+device+massage, n (%)
|
3 (3%)
|
|
Lifestyle changes+device+vitamin supplements, n (%)
|
2 (2%)
|
|
Aromatherapy, n (%)
|
3 (3%)
|
|
Kratom, n (%)
|
1 (1%)
|
|
Diet+vitamin supplements, n (%)
|
2 (2%)
|
|
Reiki, n (%)
|
2 (2%)
|
|
Lifestyle changes+massage+vitamin supplements, n (%)
|
1 (1%)
|
|
Anxiety treatment, n (%)
|
1 (1%)
|
The median number of likes and the median number of the comments of personal experience
videos were significantly higher than that of the useful and misleading videos. Almost
all videos uploaded by university hospitals and private hospitals or clinics were
useful. While 67% of the videos uploaded by practitioners were classified as useful,
33 of these videos were misleading. In addition, 82% of the videos uploaded by TV
or social media accounts were also useful ([Table 2]). [Table 3] demonstrates the content of the videos in the useful category according to the uploading
source.
Table 2
The analysis of the YouTube parameters according to uploader and usefulness.
|
|
•Useful
•n=77
|
•Misleading
•n=16
|
•Patient experience
•n=7
|
p-value
|
|
Median views, n (min–max)
|
6251(32–1023420)
|
5758 (263–435871)
|
10694 (80–2351490)
|
0.775
|
|
Median length, minutes (min–max)
|
3.32 (0.20–85)
|
3.15 (0.11–58.41)
|
10.1 (3.01–14.51)
|
0.118
|
|
Median likes, n (min–max)
|
27 (0–2825)
|
32 (0–6539)
|
351 (70–814)
|
0.008
|
|
Median dislikes, n (min–max)
|
4 (0–372)
|
3 (0–210)
|
29 (0–160)*
|
0.159
|
|
Median number of comments, n (min–max)
|
5 (0–2160)
|
10 (0–1086)
|
190 (0–370)*
|
0.025
|
|
Upload source
|
|
University hospital, n (%)
|
9 (11.7%)
|
0 (0%)
|
0 (0%)
|
<0.001
|
|
Private hospital/clinic, n (%)
|
10 (13%)
|
1 (6.3%)
|
0 (0%)
|
|
Practitioner, n (%)
|
12 (15.6%)
|
6 (37.5%)
|
0 (0%)
|
|
Individual user, n (%)
|
1 (1.3%)
|
1 (6.3%)
|
6 (85.7%)
|
|
TV/social media, n (%)
|
32 (41.6%)
|
6 (37.5%)
|
1 (14.3%)
|
|
Healthcare information website, n (%)
|
12 (15.6%)
|
1 (6.3%)
|
0 (0%)
|
|
Advertisement, n (%)
|
1 (1.3%)
|
1 (6.3%)
|
0 (0%)
|
*p<0.05 in post hoc analysis when compared with the videos categorized as useful or
misleading.
Table 3
The contents of the videos in useful category according to the upload source.
|
|
•University hospital
•n=9
|
•Private hospital/clinic
•n=10
|
•Practitioner
•n=12
|
•Individual user
•n=1
|
•TV/social media
•n=32
|
•Healthcare information website
•n=12
|
•Advertisement
•n=1
|
p-value
|
|
Epidemiology/risk factors, n (%)
|
1 (5.3%)
|
5 (26.3%)
|
1 (5.3%)
|
0 (0%)
|
7 (36.8%)
|
4 (21.4%)
|
1 (5.3%)
|
0.339
|
|
Treatment, n (%)
|
3 (15%)
|
1 (5%)
|
2 (10%)
|
1 (5%)
|
12 (60%)
|
1 (5%)
|
0 (0%)
|
|
Epidemiology/risk factors+treatment, n (%)
|
1 (16.7 %)
|
0 (0%)
|
2 (33.3%)
|
0 (0%)
|
2 (33.3%)
|
1 (16.7 %)
|
0 (0%)
|
|
Epidemiology/risk factors+pathogenesis+treatment, n (%)
|
4 (12.5%)
|
4 (12.5%)
|
7 (21.9%)
|
0 (0%)
|
11 (34.4%)
|
6 (18.8%)
|
0 (0%)
|
[Table 4] shows the content of the videos regarding the treatment information in comparison
with the uploading source. Videos uploaded by the university hospitals frequently
issued pharmacological treatment of the RLS; however, those uploaded by practitioners,
individual users, and TV or social media accounts were about the non-pharmacological
treatment of the RLS. As shown in [Table 5], lifestyle changes, yoga, vitamins supplements, and device treatment were the most
common non-pharmacologic treatment issues.
Table 4
Contents of the videos regarding the treatment information in comparison with the
upload source.
|
|
•University hospital
•n=9
|
•Private hospital/clinic
•n=10
|
•Practitioner
•n=12
|
•Individual user
•n=1
|
•TV/social media
•n=32
|
•Healthcare information website
•n=12
|
•Advertisement
•n=1
|
p-value
|
|
Pharmacologic treatment, n (%)
|
7 (41.2%)
|
2 (11.8%)
|
1 (5.9%)
|
1 (5.9%)
|
6 (35.3%)
|
0 (0%)
|
0 (0%)
|
<0.001
|
|
Non-pharmacologic treatment, n (%)
|
0 (0%)
|
1 (2.4%)
|
9 (22%)
|
7 (17.1%)
|
20 (48.8%)
|
3 (7.3%)
|
1 (2.4%)
|
|
Pharmacologic + non-pharmacologic treatment, n (%)
|
1 (5.3 %)
|
2 (10.5%)
|
6 (31.6%)
|
0 (0%)
|
4 (21.1%)
|
6 (31.6%)
|
0 (0%)
|
|
Surgical treatment, n (%)
|
0 (0%)
|
1 (100%)
|
0 (0%)
|
0 (0%)
|
0 (0%)
|
0 (0%)
|
0 (0%)
|
Table 5
Comparison of the video contents regarding the non-pharmacologic treatment options
with respect to the category.
|
|
•Useful
•n=77
|
•Misleading
•n=16
|
•Patient experience
•n=7
|
p-value
|
|
Lifestyle changes, n (%)
|
8 (100%)
|
0 (0%)
|
0 (0%)
|
<0.001
|
|
Yoga, n (%)
|
5 (100%)
|
0 (0%)
|
0 (0%)
|
|
Massage, n (%)
|
2 (100%)
|
0 (0%)
|
0 (0%)
|
|
Diet, n (%)
|
0 (0%)
|
2 (50%)
|
2 (50%)
|
|
Vitamin supplements, n (%)
|
2 (25%)
|
4 (50%)
|
2 (25%)
|
|
Radiofrequency, n (%)
|
0 (0%)
|
1 (100%)
|
0 (0%)
|
|
Acupuncture, n (%)
|
0 (0%)
|
1 (100%)
|
0 (0%)
|
|
Lifestyle changes+vitamin supplements, n (%)
|
9 (100%)
|
0 (0%)
|
0 (0%)
|
|
Device, n (%)
|
6 (100%)
|
0 (0%)
|
0 (0%)
|
|
Lifestyle changes+yoga+massage, n (%)
|
1 (100%)
|
0 (0%)
|
0 (0%)
|
|
Lifestyle changes+device+massage, n (%)
|
3 (100%)
|
0 (0%)
|
0 (0%)
|
|
Lifestyle changes+device+vitamin supplements, n (%)
|
2 (100%)
|
0 (0%)
|
0 (0%)
|
|
Aromatherapy, n (%)
|
0 (0%)
|
1 (33.3%)
|
2 (66.6%)
|
|
Kratom n (%)
|
0 (0%)
|
1 (100%)
|
0 (0%)
|
|
Diet+vitamin supplements, n (%)
|
2 (100%)
|
0 (0%)
|
0 (0%)
|
|
Reiki, n (%)
|
1 (50%)
|
1 (50%)
|
0 (0%)
|
|
Lifestyle changes+massage+vitamin supplements, n (%)
|
1 (100%)
|
0 (0%)
|
0 (0%)
|
|
Anxiety treatment, n (%)
|
0 (0%)
|
1 (100%)
|
0 (0%)
|
DISCUSSION
YouTube is the most viewed video broadcasting website worldwide. Following the registration,
any individual has the opportunity to upload videos on YouTube™. The widespread use
of YouTube makes it a perfect social media platform for direct consumer education
and marketing. Consequently, YouTube has currently become a generous source of medical
information for patients and their families[9],[10],[11]. However, the content uploaded on YouTube does not necessarily undergo confirmation
for accuracy. Thus, information on YouTube may not be reliable or accurate[12],[13],[14]. Several studies have shown that the proportion of YouTube videos providing reliable
information regarding type II diabetes, retinopathy of prematurity, peripheral neuropathy,
and Parkinson’s disease vary from one-third to one-half[4],[5],[6],[7].
The present study is the first to demonstrate the reliability of YouTube videos regarding
the RLS. Videos posted by healthcare providers are highly useful than those of non-healthcare
professional users. Our findings demonstrate that 77% of the videos uploaded on YouTube
regarding RLS were in useful category, whereas only 16 videos were providing misleading
information. The median GQS score of the useful videos were significantly higher than
that of the misleading videos and patient experience videos. However, useful videos
were not comprehensive, and a complete description of the RLS by epidemiology, risk
factors, pathogenesis evidence-based treatment of RLS indicates that vitamins C and
E treatment are likely efficacious for the treatment of RLS, particularly in uremic
patients[15]. Pneumatic compression devices and three weekly intradialytic cycling sessions have
also regarded as likely efficacious in the non-pharmacological treatment of the RLS.
Of all videos, treatment options were discussed at 78%. About 78% of the videos discussing
the treatment options of the RLS targeted non-pharmacological treatment options. Lifestyle
changes in combination with vitamin supplements, device treatment, and yoga were the
most common discussed non-pharmacological treatment options in these videos. The revised
guideline of MDS on treatment modalities, such as aromatherapy, yoga, and acupuncture,
were also uploaded on YouTube.
An interesting finding of the present study is that YouTube videos categorized as
"patient experience" seems to have a higher median view count, as well as the likes
and comments, compared to the videos which are in the "useful" or "misleading" category.
We speculate that patients’ own experience attracts more attention on YouTube compared
to the reliable information provided by the health-care professionals. We suggest
that the videos uploaded by healthcare services or professionals may improve their
popularity on YouTube, not only providing reliable information but also attracting
the patients’ attention.
The study has some limitations to be mentioned. First, the evaluation and categorization
of the videos were subjective, although the agreement between two independent reviewers
was fairly high. Second, only videos in English were included in this study. Third,
the number of views, as well as the likes and comments, can be manipulated by any
user. Finally, this study evaluated the medical information regarding RLS on YouTube
at a single time point. Since the content of YouTube may change over time, our findings
are peculiar to the time that the videos were evaluated. These results therefore need
to be interpreted with caution.
CONCLUSION
Findings of the present study demonstrate that 77% of the videos uploaded on YouTube
regarding RLS are in the useful category, whereas only 16% videos were providing misleading
information. However, even videos in the useful category do not provide a comprehensive
and complete description of the RLS by epidemiology, risk factors, pathogenesis, and
treatment. Given the high view counts and likes of the videos categorized as "patient
experience", the videos uploaded by more credible sources such as hospitals, universities,
and practitioners should aim to provide more attractive videos besides the reliable
content.
