Dear Editor,
We read with great interest the study by Arikanoglu et al. entitled “YouTube as a
source of information for the restless leg syndrome (RLS)”[1]. The paper shows that much of medical information on YouTube is low-quality or biased.
While the paper offers crucial insight, we believe that the study may have benefited
from including more keywords for its analysis.
In their study, one keyword, “restless leg syndrome”, was used to find the videos.
We attest that additional terms could have been used, including “restless legs”. This
keyword would have widen the search and capture more individuals searching for information
about RLS. In a different online study on RLS, Ingram et al. chose to use the additional
keyword “restless legs”, rather than only “restless leg syndrome”[2]. On Google Trends, the term “restless legs” has a 3-times higher average search
volume than “restless leg syndrome”[3]. This shows that the public searches more often for the symptom rather than the
actual syndrome name.
We used both “restless legs” and “restless leg syndrome” as a search title to analyze
the 30 first YouTube videos. The term “restless legs” resulted in 28 medically relevant
videos. Eighteen of them (60%) were published by private hospitals, clinics and medical
associations, whereas four videos (13%) were published by practitioners and the remaining
six videos (20%) by nonmedical specialists. In comparison, the term “restless leg
syndrome” resulted in 27 medically relevant videos, one less (3%). Uploads by private
hospitals, clinics and medical associations differed by six more videos (20%). By
practitioners and nonmedical specialists, there was one video more (4%) and four videos
more (13%), respectively. Thus, as we have shown, an online study that fails to take
into account the extra term “restless legs” may be limited in its analysis.
Given the change in nomenclature from restless leg syndrome to Willis-Ekbom disease
in 2013 by the Restless Leg Syndrome Foundation, we also believe that the keywords
“Willis-Ekbom disease” or “Willis-Ekbom” should have been used[4]. Although the Foundation changed back to the original name in 2015[5], journalistic coverage of the name change may have made patients more likely to
use the new one.
The evaluation of YouTube content on restless leg syndrome conducted by Arikanoglu
et al. provides insight on the reliability of information about this subject on the
platform. Our letter highlights some limitations and encourages researchers to use
additional keywords to allow for a more robust analysis.
