Today's long and seemingly complex post from post from onlinelibrary.wiley.com (see link below) is a fascination study of how neuropathy is represented on YouTube. This blog is continually looking for informational videos from YouTube and elsewhere on the subject of nerve damage but it really is often searching for a needle in the haystack because of the preponderance of videos issued by private commercial clinics and/or doctors/ alternative practitioners and even drug companies. Finding objective and unbiased video information on neuropathy is very difficult indeed. This study is full of tables and statistics which you may find interesting (better to follow the link to the original article) but it is the text that is most readable and worthy of our attention. if you know of any neuropathy videos that are not commercially attached, we would be glad to hear of them.
Harsh V. Gupta MD1,*, Ricky W. Lee MD1, Sunil K. Raina MD2, Brian L. Behrle1,
Archana Hinduja MD1 and Manoj K. Mittal MD3
Article first published online: 19 OCT 2015
DOI: 10.1002/mus.24916 © 2015 Wiley Periodicals, Inc.
Enhanced Article (HTML) Get PDF (80K)
ABSTRACT
Introduction: YouTube is an important resource for patients. No study has evaluated the information on peripheral neuropathy disseminated by YouTube videos. In this study, our aim was to perform a systematic review of information on YouTube regarding peripheral neuropathy. Methods: The Web site (www.youtube.com) was searched between September 19 and 21, 2014, for the terms “neuropathy,” “peripheral neuropathy,” “diabetic neuropathy,” “neuropathy causes,” and “neuropathy treatment.” Results: Two hundred videos met the inclusion criteria. Healthcare professionals accounted for almost half of the treatment videos (41 of 92; 44.6%), and most came from chiropractors (18 of 41; 43.9%). Alternative medicine was cited most frequently among the treatment discussions (54 of 145, 37.2%), followed by devices (38 of 145, 26.2%), and pharmacological treatments (23 of 145, 15.9%). Conclusions: Approximately half of the treatment options discussed in the videos were not evidence-based. Caution should be exercised when YouTube videos are used as a patient resource. Muscle Nerve 53: 27–31, 2016
Consultations for peripheral neuropathy are among the most common problems neurologists encounter in daily practice. In 1999, a Medicare survey showed 8–9% of primary or secondary diagnoses were related to peripheral neuropathy.[1] Peripheral neuropathy is associated with high morbidity and high cost to society, as the same 1999 Medicare study also demonstrated an annual cost exceeding $3.5 billion related to peripheral neuropathy. Thus, it is imperative for patients to receive appropriate information on diagnostic and treatment options for peripheral neuropathy.
With the rise and rapid growth of technology, patients also obtain information outside of their physicians. It is not uncommon for patients to bring information from social media to their doctor visits. YouTube is a video sharing Web site that was created in 2005[2] and is behind Facebook and Google+ in popularity among social media Web sites.[3] In U.S. adults ages 18–34, YouTube has more reach than any other cable network and is available in several countries and across 61 languages.[4] YouTube as a source of information for several other conditions and procedures has been evaluated, but not for peripheral neuropathy.[5-8] Our aim was to perform a cross-sectional study to assess critically the type of information available on YouTube about neuropathy and compare the neuropathy videos according to various video sources and treatment discussion status. Also, we hoped to understand the type of treatment modalities discussed by means of these videos as compared to standard treatments. Our goal was to improve the awareness of physicians to the type of neuropathy information available on YouTube.
MATERIALS AND METHODS
Study Design and Inclusion Criteria
This was a cross-sectional study, which was exempted from Institutional Review Board review due to lack of direct patient contact and no risk to subjects. YouTube results can be sorted by 4 categories: (1) relevance, (2) upload date, (3) view count, and (4) rating. Our search was based on “relevance,” which is the default search setting for YouTube. Prior publications on YouTube were also based on the “relevance” criterion. Internet users also see the videos in the same order when they are searching for information on peripheral neuropathy. Relevance is determined by the duration of the video viewed (out of the total duration). Between September 19 and September 21, 2014, authors H.G. and R.L. searched YouTube using the key words “peripheral neuropathy,” “neuropathy,” “diabetic neuropathy,” “neuropathy treatment,” and “neuropathy complications.” This search was performed using Microsoft Internet Explorer 10. The videos were viewed independently by H.G. and R.L. Disagreements between the 2 raters were resolved by M.M.
The search revealed more than 2000 videos. We analyzed the first 200 videos, which were less than 10 min in duration, available on the first 10 pages of search results, and in the English language. A similar search criterion was used in other YouTube studies.[7, 8] Any duplicate videos were considered as 1, and videos lacking audio were excluded.
Video Characteristics
We recorded the following parameters for all videos on a Microsoft Excel® spreadsheet: number of views, duration, “likes,” and “dislikes.” Viewers may choose to “like” or “dislike” a video depending on their perception. The video sources were categorized into 3 groups: patients, healthcare professionals (physicians, podiatrists, pharmacists, chiropractors, or physical therapists), and others (advertisement, news report, song, humor, or animation).
Content Analysis
The content of the videos was analyzed to evaluate the following items about neuropathy: causes, types of neuropathy, signs and symptoms, complications, diagnostic investigations, and treatment.
Statistical Analysis
Descriptive statistics were computed for all variables. The median with interquartile range was computed for continuous variables, and frequencies and percentages were computed for categorical variables. A univariable analysis was performed to compare videos by video source and whether treatment was discussed or not. Nonparametric Kruskal-Wallis tests were used to assess differences in more than 2 continuous variables. Wilcoxon rank sum tests for 2 continuous variables and chi square or Fisher exact tests were used for categorical factors. Ad hoc pairwise comparisons were done using a significance criterion of 0.017 (0.05/3) for video source and 0.025 (0.05/2) for treatment discussion to account for multiple comparisons. A P value less than 0.05 was considered statistically significant. All analyses were performed using JMP 11.0 for the Windows.
RESULTS
A total of 200 videos were reviewed. The majority of these videos (n = 161; 80.5%) discussed the symptoms of neuropathy (Table 1). Less than half of the videos included a discussion on the causes (n = 89; 44.5%) of neuropathy. Only a minority of the videos mentioned the complications (8%), types (7.5%), or diagnostic investigations (4.5%) of neuropathy.
Table 1. Comparison of YouTube videos according to the source of video.
Patient description (N = 52, 26%) N (%)
Healthcare professionals (N = 103, 51.5%) N (%)
Others (N = 45, 22.5%) N (%)
P-value
a
P-Value calculated using Fisher exact test.
P-Value calculated using Chi square test.
P-Value calculated using Kruskal-Wallis test.
Types of neuropathy explaineda
1 (1.9)
9 (8.7)
5 (11.1)
0.18
Causes of neuropathy mentioned
11 (21.2)
51 (49.5)
27 (60)
0.0002
Symptoms and signs
49 (94.2)
82 (79.6)
30 (66.7)
0.003
Diagnostic investigations discusseda
2 (3.9)
7 (6.8)
0 (0)
0.18
Complications discusseda
1 (1.9)
12 (11.7)
3 (6.7)
0.10
Duration of video (minutes, median, IQR)
2.4 (1.5–4.2)
2.5 (2–4.6)
3.1 (2.0–5.4)
0.51
No. of views (median, IQR)
1539.5 (443.5–4033.8)
449 (113–2170)
1699 (217.5–10208.5)
0.0034
No. of likes (median, IQR)
1 (0–5)
1 (0–3)
2 (0–8.5)
0.18
Healthcare professionals, patients, and others contributed 51%, 26%, and 23% of the videos, respectively. On average, the number of views and likes was higher when the source of information was others, but only the number of views was statistically significant (P = 0.0034).
Most of the videos from patients (94%) discussed the symptoms of neuropathy, which is significantly more than the videos from the other 2 sources (P = 0.003). More videos from healthcare professionals discussed diagnostic investigations or the complications of neuropathy; however, they were not statistically significant. Compared with videos generated by healthcare professionals and patients, the causes of neuropathy were mentioned more frequently in videos where the source was others (P = 0.0002).
We tried to identify potential factors that would predict a favorable response or increased viewership (Tables 2 and 3). The only predictor identified was whether treatment was discussed in the video or not. Treatment of neuropathy was discussed in 92/200 (46%) of the videos. Videos with treatment discussions had significantly higher number of views (median 1707 [IQR 359-4737], P < 0.0001). The median duration of videos that discussed treatment was also found to be significantly longer (3.2 min vs. 2.3 min) (P = 0.02).
Table 2. Demographics of neuropathy videos and predictors of number of views and number of likes on YouTube (Total number of videos: 200).
Yes
No
P-valuea
a
P-value calculated using Wilcoxon rank sum test.
Types of neuropathy (N, %)
15 (7.5)
185 (92.5)
No. of views (median, interquartile range)
802 (27–8566)
740 (181–3153)
0.87
No. of likes (median, interquartile range)
3 (0–11)
1 (0–3.5)
0.17
Causes of neuropathy (N, %)
89 (44.5)
111 (55.5)
No. of views (median, interquartile range)
894 (249–3393)
679 (145–3047)
0.31
No. of likes (median, interquartile range)
1 (0–4.5)
1 (0–3)
0.50
Symptoms and signs (N, %)
161 (80.5)
39 (19.5)
No. of views (median, interquartile range)
679 (148–2692)
1319 (308–6354)
0.07
No. of likes (median, interquartile range)
1 (0–3)
2 (0–10)
0.02
Diagnostic investigations (N, %)
9 (4.5)
191 (95.5)
No. of views (median, interquartile range)
529 (225–1647)
802 (176–3411)
0.44
No. of likes (median, interquartile range)
0 (0–3.5)
1 (0–4)
0.44
Complications (N, %)
16 (8)
184 (92)
No. of views (median, interquartile range)
381 (116.3–4414.8)
788.5 (188.8–3339.5)
0.74
No. of likes (median, interquartile range)
1 (0–2.8)
1 (0–4)
0.95
Table 3. Comparison of YouTube Videos with or without discussion of treatments.
Treatment discussed
Treatment not discussed
P-Value
a
IQR (interquartiles range).
P-Value calculated using Wilcoxon rank sum test.
P-Value calculated using chi square test.
Source
0.22
Healthcare professional (number, %)
41 (44.6)
62 (57.4)
Patient (n, %)
28 (30.7)
24 (22.0)
Others (n, %)
22 (24.2)
23 (21.1)
Views (median, IQR)a
1707 (359–4737)
449 (83–1859)
less than 0 data-blogger-escaped-.0001="" data-blogger-escaped-td="">
Likes (median, IQR)a
2 (0–7)
0 (0–2)
0.0003
Duration (median, IQR)a
3.2 min (2.1–5.2)
2.3 min (1.5–4.4)
0.02
A total of 92 videos included a discussion on neuropathy treatment (Table 4). Discussion of more than 1 treatment modality (range, 2–5) was noted in 27/92 (29.3%) of videos. Alternative medicine was most frequently cited among the treatment discussions (54/145; 37.2%), followed by devices (38/145; 26.2%). Pharmacologic treatments, including antidepressants, anticonvulsants, nonspecific analgesics, or statin medications, were only mentioned in 15.9% (23/145) of the treatment discussion.
Table 4. Neuropathy treatments discussed on the YouTube videos (No. of Videos: 92a).
Treatment type
Number
a
A video may discuss more than 1 treatment option
b
Diabetic control or alcohol cessation
c
Exercise or diet
d
Orthotics or physical therapy
e
Homeopathy, chiropractic therapy, traditional Chinese medicine, acupuncture, herbal medicine, massage, reflexology, oxygen therapy, psychotherapy, nutritional supplement, or phototherapy
Treatment of underlying pathologyb
Healthcare professional (Internal Medicine physician, podiatrist, pharmacist)
4
Patient
3
Others
5
Lifestyle modificationc
Healthcare professional (podiatrist, chiropractor, physical therapist)
4
Others
4
Supportive therapyd
Healthcare professional (podiatrist, chiropractor)
3
Patient
1
Others
3
Pharmacologic treatment
Antidepressant
Healthcare professional (Internal Medicine physician, podiatrist, chiropractor)
3
Others
2
Anticonvulsant
Healthcare professional (Internal Medicine physician, podiatrist, chiropractor)
3
Others
2
Analgesic
Healthcare professional (Neurologist, podiatrist, chiropractor)
4
Patient
4
Others
4
Statin
Healthcare professional (Internal Medicine physician)
1
Surgical decompression of entrapment neuropathy
Patient
2
Others
1
Alternative medicinee
Healthcare professional (Internal Medicine physician, podiatrist, chiropractor)
29
Patient
18
Others
7
Device
Percutaneous electrical stimulation
Healthcare professional (Internal Medicine physician, podiatrist, chiropractor)
8
Patient
5
Others
4
Low intensity laser / electromagnetic field treatment / vibrational therapy
Healthcare professional (Internal Medicine physician, foot surgeon, podiatrist, chiropractor)
12
Patient
4
Others
5
Total
145
There was no statistical difference between the 3 groups that discussed the treatment of neuropathy (P = 0.22) (Table 3). Healthcare professionals accounted for almost half of the treatment videos (41 of 92; 44.6%) and the treatment modalities discussed (71 of 145, 49%). Among healthcare professionals, most of the neuropathy treatment videos were from chiropractors (18 of 41; 43.9%). Only a minority (7 of 41; 17.1%) were posted by physicians. One of the videos was from a neurologist who recommended analgesics as a treatment for neuropathic pain. The rest of the videos posted by physicians were internal medicine specialists (5) or orthopedic foot surgeons (1). As a group, only 15.5% (11 of 71) of treatments discussed by healthcare professionals were based on pharmacologic agents. The patient and advertisement group each accounted for 25.5 % (37 of 145) of treatments discussed. More than half of the discussions by patients (22 of 37; 59.5%) were on alternative medicine, low-intensity laser therapy, electromagnetic field treatment, or vibrational therapy.
DISCUSSION
The YouTube Web site has a total of more than 1 billion users. Hundreds of millions of hours of videos are watched every day on this Web site, generating billions of views. This makes it a perfect medium for direct consumer education and marketing. YouTube has become an important resource for patients and their families. Unfortunately, information on YouTube may not be reliable or accurate. Studies have evaluated the content of YouTube on epilepsy, movement disorders, and the Epley maneuver, and the accuracy of the information was found to be 30–60%.[9-13]
YouTube is a consumer-driven social media platform. To attract viewership, YouTube videos need to identify with viewer needs and preferences. In our cohort, only a minority of the videos discussed diagnostic investigations, types, or complications of neuropathy. It is possible that these topics are perceived as less critical on YouTube. At the same time, a majority of the videos had discussions on the symptoms, causes, and treatments of neuropathy, which may point toward the information that is being sought by consumers. Short relevant videos are ranked higher by YouTube, thus neurologists should prepare videos that target consumer needs to reach out to the public by means of social media like YouTube. In this study, we found that videos discussing treatment options were viewed more often than videos that did not discuss treatment (number of views: 1707 versus 449), which further highlights the importance of including consumer needs in neuropathy videos for higher visibility. In addition, time could be saved during an office visit by directing patients to YouTube videos (prepared by individual physicians or reliable sources like the American Academy of Neurology [AAN]) to educate them about neuropathy symptoms, causes, and treatment options before their office visit. This would also help patients to learn about neuropathy and could motivate them to come prepared with questions, empowering them further.
The video content varied according to the source; patients focused more on signs and symptoms of neuropathic pain, and healthcare professionals focused on causes and treatment. Neuropathic pain is often disabling and difficult to treat. Despite having AAN practice parameters for neuropathic pain management, only approximately 30% of treatment discussion in our cohort (43 of 145) mentioned the use of antidepressants, anticonvulsants, or percutaneous electrical nerve stimulation, which have level A or B evidence for efficacy.[15] Many of the patient videos described inadequate control of their pain by pharmacologic agents as recommended by the AAN; it would be interesting to know whether they received appropriate and adequate treatment for their pain. Poor representation of AAN guidelines in YouTube videos may be related the following: (1) the lack of information among the general population about the AAN guidelines; (2) lack of adequate benefit from the treatment recommended by AAN guidelines; (3) patients' preference to pursue non-Western medicine; (4) the need for the patients without health insurance to pursue alternative treatment; or (5) treatment by a nonneurologist due to a national shortage of neurologists.[16] These reasons may also explain the interest in alternate therapies (alternative medicine, low-intensity laser, electromagnetic field treatment, or vibrational therapy) in more than half of the videos discussing treatment. Also, alternate therapies do not need a physician prescription, which may increase their popularity for direct consumer marketing. Chiropractors are often visited by U.S. adults for musculoskeletal pain, and neuropathic pain is no exception. Most chiropractors are private practitioners or work in small group practices. It is difficult for these practitioners to thrive financially due to high competition, which leads to aggressive marketing attempts and may explain the majority of treatment videos from this group. Inadequate neuropathic pain control probably further directs neuropathy patients toward these practitioners. Unfortunately, only 1 video was uploaded by a neurologist, which shows a lack of relevant videos being generated by neuropathy specialists. Some of the possible reasons for lack of videos by neurologists could be the lack of social media training, lack of time and resources for making videos, and failure to realize how important it is to register a presence on social media.
There are several limitations in this study. The study was a one-time search, while YouTube video content is constantly in flux. Unfortunately, this is the inherent deficiency in every YouTube study.[5-8] Our goal is to present the most up-to-date information at the time of the study to understand and improve our knowledge. The videos of greater than 10-min duration and beyond the 10th page of the search result were excluded with the assumption that viewers are unlikely to focus on long videos and beyond a certain point. This limitation was minimized by a large sample size. Although the keywords for search were selected carefully, we did not come across any videos from professional societies. It is possible that videos from professional societies exist on YouTube but were not considered during analysis.
In summary, this study suggests that YouTube can be a good patient resource for neuropathy, especially for the signs and symptoms of neuropathy. However, there are also limitations and deficiencies in the information provided by the YouTube videos. Only a minority of treatment discussions were based on AAN recommendations. Therefore, physicians should caution their patients to be wary of the information from potentially unreliable sources. Even though our search was limited to the first 200 videos, the findings suggest there was also a concerning under-representation of contributions from the neurology community. With the ever-increasing reach of YouTube to our patients, a stronger presence of neurologists in this social medium is needed; possibly national organizations like the AAN and others can provide the lead by making short educational videos about peripheral neuropathy to support evidence based medicine.
ACKNOWLEDGMENTS
This article was presented as a poster at the American Academy of Neurology (AAN) meeting in 2015 at Washington, DC, USA. Author Contributions: Dr. Gupta, Dr. Mittal, and Dr. Lee: study concept and design, acquisition of data, viewing the videos, and drafting of the manuscript; Dr. Mittal: resolving disagreement between the first 2 authors; Dr. Raina and Brian L Behrle: performing statistics on the Excel® document; Dr. Hinduja, Dr. Lee, and Dr. Mittal: critical review of the manuscript for important intellectual content. Disclosure: The authors report no disclosure relevant to the manuscript. Dr. Gupta reports no financial disclosure. Dr. Lee reports no financial disclosure. Dr. Raina reports no financial disclosure. Brian L Behrle reports no financial disclosure. Dr. Hinduja reports no financial disclosure. Dr. Mittal reports no financial disclosure. Study Funding: None.
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