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Is social media reliable as a source of information on Peyronie’s disease treatment?

Abstract

Although YouTube video is one of the most widely used and easily accessible information sharing sources, its widespread use can carry the risk of spreading misleading and unreliable information. We aimed to evaluate the accuracy, reliability, quality, and content of the most viewed YouTube videos related to Peyronie’s disease treatment. The keywords of “penile curvature”, “penile deformity”, “bent penis” “curved penis”, and “Peyronie’s disease” were searched on YouTube. Among 700 YouTube videos, 267 videos were included in the study. They were categorized by two independent urologists with board certification as accurate information (n = 138, 51.7%) or inaccurate information (n = 129, 48.3%). Accurate videos contained information about the treatment of Peyronie’s disease with proven scientific accuracy according to the current guidelines, whereas inaccurate videos contained scientifically unproven or incorrect information and recommendations not in the guidelines. A 5-point modified DISCERN scale and Global Quality Score were used for reliability and quality assessment. Although the accurate information group had a significantly higher DISCERN Score (3, IQR = 3–4 vs. 1, IQR = 1–2, p < .001) and Global Quality Score (5, IQR = 4–5 vs. 2, IQR = 1–3 p < 0.001); the number of views per day (10.37, IQR = 3.01–28.12 vs. 6.65, IQR = 1.55–27.87) and likes (36, IQR = 6–145 vs. 19.5, IQR = 4–121.7) were higher but not significant in the inaccurate information group. The majority of the videos in the inaccurate information group were uploaded by medical advertisement/for profit companies (51.2%) and individual users/patients (38.8%), whereas universities/professional organizations/nonprofit physician/physician groups constituted the majority in the accurate information group (60.9%). According to our findings, videos containing inaccurate information are more popular. People should be made aware that they should not immediately believe the videos containing medical advertisements without consulting nonprofit physicians.

Introduction

Peyronie’s disease (PD) is a localized connective tissue disease characterized by fibrous plaque formation in the tunica albuginea of the penile corpora cavernosa. The general prevalence is 0.5–13% [1,2]. PD usually causes penile bending, shortening, or pain and may even cause difficulties in maintaining erection or in sexual intercourse [3]. In the evidence-based medicine, there is still no medical treatment with full effect. Different agents may show different effects in terms of penile curvature stabilization, reduction in penile plaque size, and penile pain [2]. In cases of severe deformity (>30° of curvature) and/or erectile dysfunction, surgery is recommended. It should not be forgotten that there is not the ‘best’ surgical method and individualized treatment is required [1,3].

In recent years, the internet has become a frequently used tool for health care information because of its easy accessibility. It has also become an important reference for patients delaying consultation with a doctor because of a feeling of embarrassment [4]. It is observed that the most widely used information sharing source among internet users is YouTube [5]. However, the widespread use of YouTube videos also carries the risk of spreading misleading, and unreliable information. Therefore, in recent years, the quality, reliability, and content of YouTube videos related to different medical branches and diseases have been examined in terms of whether they are reliable educational and information sources [6,7,8].

To the best of our knowledge, the accuracy of YouTube videos on PD treatment as a source of information has not yet been investigated. We hypothesized that YouTube is not a reliable source of information on this topic. Exposure of people to misleading information related to PD should be avoided to prevent patients from making wrong decisions. Therefore, our aim was to evaluate the content, accuracy, reliability, and quality of the most viewed YouTube videos related to PD treatment.

Materials and methods

Data collection

The keywords of “penile curvature”, “penile deformity”, “bent penis”, “curved penis”, and “Peyronie’s disease” were searched on YouTube (http://www.youtube.com). We sorted the videos according to view count. The most viewed videos on YouTube are known to belong to the first few pages searched and there are about 20 videos per page [4,5,6]. Therefore, we recorded the first 700 most viewed video in a playlist on March 24, 2021, to facilitate evaluation since the order of videos and search results on YouTube can vary every day. The videos were viewed and analyzed separately by two independent urologists with board certification (Fellow of the European Board of Urology) (IS and NB) When duplicated videos were detected, one of them was selected for analysis. The averages of the parameters related to multi-part videos were recorded and each of these videos was counted as one video. Videos containing surgical images did not use understandable language for ordinary people who do not know the medical terms. These videos were educational videos for medical students, urology residents or specialists in urology, so we described them as “irrelevant” and excluded them. Non-English videos and videos without audio or visual were also excluded from the study. This data collection method has been used in previous studies evaluating YouTube videos [4,5,6]. Figure 1 shows the flowchart of the study design.

Fig. 1
figure1

Flowchart of the study design.

Evaluation of the video characteristics

The number of total views, views per day, likes, dislikes, comments, video power index, duration on YouTube, and video length were recorded for each video. Video power index was calculated as follows: [likes × 100/(likes + dislikes)] × [number of views per day]/100 [9]. All videos were categorized into two main groups in terms of accuracy of information: accurate and inaccurate. This categorization was done as follows:

  1. 1.

    Accurate information: according to the current recommendations of European Urology Association (EAU) guidelines and American Urological Association (AUA) guidelines, videos containing information about the treatment of PD with proven scientific accuracy were included in this group [2,10].

  2. 2.

    Inaccurate information: Videos on treatment of PD with scientifically unproven or incorrect information and recommendations not in the EAU and AUA guidelines were included in this group. Videos containing partially accurate or partially inaccurate information and those containing both reliable and non-reliable information were also evaluated in this group.

We also categorized videos according to the sources of the uploads as follows: universities/professional organizations/nonprofit physicians/physicians (source 1), stand-alone health information websites (source 2), medical advertisements/for-profit-organizations (source 3), individual users (source 4) and TV programs (source 5). Other classifications were also made in terms of the speaker giving the explanation (physician/non-physician health provider/individual in the video/external voice).

Scoring tools for the video evaluation

A 5-point modified DISCERN tool was used to score the video reliability, similar to previous studies in the literature [4,5,6,11]. We also used the Global Quality Score (GQS) to evaluate the quality, accessibility, and overall flow of information within the videos [12]. In a few studies related to YouTube videos, several different rating scales have been used to evaluate video comprehensiveness [6,7,8]. Since we found very rare videos explaining all treatment options for PD according to a particular treatment algorithm that takes into account the main points and recommendations of EAU and AUA guidelines on PD, we could not evaluate the videos according to such a modified comprehensiveness scale. Therefore, we only analyzed and grouped which treatment options were mentioned in each video.

Statistical analysis

Normality of variables was evaluated using histogram, Q–Q plots, Kolmogorov–Smirnov and Shapiro–Wilk tests. The Levene test was used for assessing variance homogeneity. Mann–Whitney U test was used in nonnormal distribution between two groups. To detect differences between five groups of nonnormally distributed continuous variables, Kruskal–Wallis test was used, additionally a Bonferroni–Dunn test was used as a multiple comparison test. Chi-square test or Fisher’s exact test was used for categorical variables. To investigate the association between parameters, Spearman’s correlation test was used. The intraclass correlation coefficient was used to evaluate interobserver reliability, while Cohen’s kappa score was used to determine inter-rater agreement. All analyses were done using the IBM SPSS Statistics 23 (IBM, Armonk, NY USA) software package. p < 0.05 was considered statistically significant.

Results

The first 700 most viewed YouTube videos on PD treatment were recorded in a playlist after using the search terms. A total of 267 videos were included in our study after evaluation and they were classified into two main groups: accurate information (n = 138, 51.7%) and inaccurate information (n = 129, 48.3%). The median duration on YouTube of these 267 videos uploaded between April 2006 and January 2021 was 40 (minimum: 3 to maximum: 579) months.

The level of inter-rater agreement in terms of accuracy assessment of videos was positive between the two investigators (kappa coefficient = 0.856). The intraclass correlation coefficient for modified DISCERN score was calculated as 0.962, (95% nCI 0.953–0.987), while it was 0.972, (95% CI 0.942–0.990) for GQS. Video characteristics are shown in Table 1. The values in the accurate information group were significantly higher in terms of DISCERN Score and GQS. Although the number of total views, the number of views per day, likes, dislikes and comments were higher in the inaccurate information group, there were no significant differences.

Table 1 Analysis of video characteristics according to their accuracy.

Although the information about pathogenesis and symptoms were reliable in all Video, inaccurate information rates for each treatment option were high (Table 2). Table 2 represents the characteristics and subgroup analysis of videos according to the sources of uploads. Analyses of video accuracy according to treatment options and sources of uploads are shown in Fig. 2.

Table 2 Analysis of video characteristics according to sources of uploads.
Fig. 2
figure2

Analysis of video accuracy according to treatment options (A) and sources of uploads (B) (* shows p < 0.001).

In videos containing accurate information, the most mentioned treatment options were surgical procedures (66.7%), intralesional treatments (51.4%), and oral treatments (37.0%), respectively. On the other hand, the most described treatment options in inaccurate information videos were penile traction/vacuum devices (34.9%), penile massage or manual penile traction (22.5%), and herbal and homeopathic treatments (20.9%). The most accurate information (92.0%) was presented on topical gel treatments in PD, while we found that nearly all the information (96.4%) on herbal and homeopathic treatments was inaccurate (Fig. 2).

In the accurate information group, most of the sources of uploads consisted of universities/professional organizations/nonprofit physician/physician groups (60.9%), and most of the speakers consisted of physicians (83.3%). On the other hand, in the inaccurate information group, medical advertisement/for profit companies (51.2%) and individual users/patients (38.8%) constituted the majority of the source of uploads, and individuals in the videos (47.3%) constituted the majority of speakers. All the information (100%) given by stand-alone health information websites was accurate, while the most inaccurate information (90.4%) was given by medical advertisement/ for-profit companies (Fig. 2).

We have observed that total number of views and daily views were higher for TV programs rather than other sources of uploads. TV programs were found to be the third most trusted source with an accuracy rate of 64.7%, following stand-alone health information websites (100%) and universities/professional organizations/nonprofit physician/physician groups (92.3%). We observed that the high participation (82.3%) of physicians on TV programs caused this finding.

There were no statistically significant correlations between total number of views and DISCERN scores (ρ = −0.026, p = 0.677), total number of views and GQS (ρ = −0.073, p = 0.235), likes and DISCERN scores (ρ = −0.017, p = 0.781), or likes and GQS (ρ = −0.013, p = 0.837). These findings show that viewers are unable to accurately distinguish the reliability and quality of videos.

Discussion

For the last 15 years, much medical information has been made accessible to people through the internet and especially on YouTube [13]. Even though YouTube videos published by health care professionals are thought to be useful, the videos of people who do not have enough medical knowledge may spread misleading information and pose a danger [13,14]. In some previous studies, the quality and content of YouTube videos on several diseases have been evaluated. There are papers examining videos related to urological pathologies such as benign prostatic hyperplasia [15], prostate cancer [7], and premature ejaculation [4], as well as studies on videos of other medical topics such as rheumatoid arthritis [8], breast self examination [6], cervical cancer [16], schizophrenia [17],and myocardial infarction [18]. To the best of our knowledge, this is the first study to evaluate the reliability, quality, and content of YouTube videos on PD treatment as a source of information. According to our observation, the number of total video views related to PD treatment was higher than videos on benign prostate hyperplasia (12,112,647 vs. 976,768) and prostate cancer (7.7 million). But the number of total video views showed that premature ejaculation (more than 25 million) were more popular.

Although some mechanisms are explained, the etiology and pathogenesis related to PD are not yet fully understood [19]. Spontaneous improvement has been reported in 3–13% of patients, but curvature may remain stable in 36–67% of patients, and progression may be observed in 21–48% [2]. An individualized treatment is more suitable, although there is a recommended treatment algorithm according to EAU and AUA guidelines [2,10]. Erectile dysfunction can be accompanied in ~30% of men with PD, and the psychological distress caused by curvature may further negatively affect the sexual disorder [20]. Although surgery is the gold standard for treatment of severe curvatures and deformities above 30°, it is an invasive procedure and has some complications such as penile shortening and decreases in penile sensation [21]. Although there are many different non-surgical treatment options in the literature, strongly proven reliable agents are very few according to the guidelines [2,19,22].

According to the new updates in the EAU 2020 guideline, topical agents applied to the penile shaft (verapamil gel, H-100 gel) and oral treatments including vitamin E, colchicine, acetyl esters of carnitine, potassium para-aminobenzoate (potaba), tamoxifen, and pentoxifylline are strongly discouraged [2], although it has been reported in the EAU 2019 guideline that potaba may decrease penile plaque size and penile pain and provide a stabilization in curvature [22]. However, we observed that the rate of inaccurate information was not low in videos talking about oral treatments (21.5%) and those on topical gel treatments (8%).The ingredients and safety profile of booster capsules, homeopathic remedies, or other herbal products mentioned in these videos are not fully known, so they can pose a danger to human health. Moreover, the topical agents mentioned in the videos such as mast mood oil or king kobra oil may cause irritation, abrasion, infection, or other adverse effects on the penis [23].

It has been strongly recommended that collagenase clostridium histolyticum (CCH), which has been approved by the United States Food and Drug Administration, and also interferon alpha-2b in the form of intralesional injection therapy, can be offered for patients with dorsal or lateral >30° curvature in the stable phase of PD as a non-surgical treatment option. Other agents such as steroids, calcium channel antagonists (verapamil and nicardipine), hyaluronic acid, or botulinum toxin are not recommended as intralesional treatment because of side effects and contradictory results [2]. The current AUA guideline indicated the use of intralesional verapamil with a weak recommendation. Considering descriptions and discussions in both guidelines, we determined the videos offering intralesional verapamil as inaccurate information [10]. Not using ESWT and iontophoresis are strongly recommended since there is no evidence that these agents improve penile curvature and plaque size. ESWT may only be used for pain relief [2]. Penile traction devices (PTD) or vacuum erection devices (VED) in combination with the intralesional therapy of CCH may be offered with weak evidence of reducing penile curvature and increasing penile length. However, it is not possible to understand whether this is achieved by the effect of combined treatment or if PTD/VED also has an isolated effect [2]. In some clinical trials, new injection treatments including placenta-derived mesenchymal stem cells, human adipose tissue-derived stem cells, and Platelet-Rich Plasma (PRP) have been investigated in animal models [19,24]. As there is not enough evidence, there is no recommendation for their use in the current guidelines [2,10]. Therefore, encouraging the use of these agents through medical advertisements in YouTube videos, whose effectiveness has not been proven, may pose a danger to patient health. However, in our evaluation, the rate of inaccurate information on treatment options that are strongly recommended not to be used for improving curvature according to the guidelines was extremely high (18.3% for intralesional therapies, 48.6% for ESWT, 56.3% for PTD/VED, 96.4% for herbal and homeopathic therapies, 88.9% for PRP therapy or other biological treatments, and 78.4% for penile massage or manual penile traction).

After the disease has been stable in terms of pain or deformity deterioration for at least 3 months, if surgery was chosen, penile length, severity of curvature, erectile function status, and patient expectations should be evaluated before determining the surgical technique. Tunical shortening procedures such as plication, and tunical lengthening procedures such as incision or excision and/or grafting can be performed with or without the addition of penile prosthesis implantation. But the sliding techniques should be used cautiously to prevent significant complications such as glans necrosis [2]. Despite this algorithm, we found that the rate of false information about surgical procedures was 16.4% in our study.

In the literature, almost all researchers except for a few studies [4,8] have stated that YouTube was an unreliable source for medical information [6,7,15,18]. But the numbers of total views, views per month and likes in these inaccurate videos were much more than the highest-quality videos published by medical institutions and organizations. The topic of penile curvature can be an obscene issue and, unfortunately, it is susceptible to abuse as with other male sexuality diseases such as erectile dysfunction and premature ejaculation [4,25].

In our study, 50.5% of all videos consisted of medical advertisement/for profit companies and individual users. Unluckily, we observed that these videos were more prone to using unreliable information to sell products or increase the popularity of treatments that have not yet been proven in guidelines [2,22]. It was seen in some videos that physicians also shared nonreliable information for commercial purposes, especially in the field of ESWT and PRP injection. However, interestingly our results show that videos containing medical advertisements and that are commercially for-profit are often listed among the more popular videos. We think that this is the result of the tricks done to increase the discoverability and viewership of YouTube videos. Therefore, the most viewed videos may not be the most accurate, validated and best understood videos. As a result, it is not easy and practical for a lay person to find the ideal video. Official health institutions and organizations should undertake more duties to provide accurate medical information by uploading more educational and informational videos to YouTube, since it is known that the majority of people do not question the accuracy and reliability of online information sources [7,14]. Web-based service systems for sharing information between health professionals and the general public and also for checking the reliability and quality of medical YouTube videos may also improve male sexual health associated with PD [14,26].

Limitations

To the best of our knowledge, there is no other study evaluating the most viewed YouTube videos related to PD treatment in terms of content, reliability, and quality. However, our study has some limitations. Our main limitation is that the number of video views and the search order may daily change because of YouTube’s dynamic nature. To reduce the impact of this restriction, we recorded the videos on a playlist by using snapshot analysis as in the previous studies. Second, non-English-language videos and other videos except for the most viewed 700 videos on PD treatment were not analyzed. In addition, although there are some defined modifying comprehensiveness scales in previous studies evaluating YouTube videos, we could not adapt a similar scale. Instead, we evaluated separately which treatment options were correctly mentioned in the Video in accordance with the guidelines. Due to the YouTube searching system, it is also inevitable to encounter confounding factors that may cause overlapping results or missing findings (e.g., in our assessment, the rate of videos providing information about natural cures related to PD was observed as 29.9%). Although we have used a five-point modified DISCERN tool with reference to previous studies, these studies have stated that their formal validation has not yet been completed. Moreover, it would be a better assessment to analyze whether the ranking algorithm used in YouTube gives higher placement of better-quality Video, and in general what characteristics are associated with a higher relevance/higher ranking position.

Conclusion

In our study, we found that 48.3% of all videos related to PD treatment contain inaccurate information. Accurate information was often given on surgical procedures, intralesional treatments, and oral treatments, while the majority of inaccurate information was on penile traction/vacuum devices, penile massage/manual penile traction and herbal and homeopathic treatments. But interestingly, inaccurate videos are more popular with viewers. Based on these results, we consider that people should not immediately believe videos containing medical advertisements and that are commercially for-profit. People should be made aware that they should not start such treatments on their own without consulting nonprofit physicians.

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NB: the conception and design of the study, acquisition of data, analysis and interpretation of data, literature search, critical revision of the manuscript for important intellectual content. IS: the conception and design of the study, acquisition of data, analysis, and interpretation of data, literature search, drafting the article, final approval of the version to be submitted.

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Correspondence to Ismail Selvi.

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Baydilli, N., Selvi, I. Is social media reliable as a source of information on Peyronie’s disease treatment?. Int J Impot Res (2021). https://doi.org/10.1038/s41443-021-00454-3

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