Evaluation of YouTube Videos on Primary Bladder Pain Syndrome - Beyond the Abstract

Primary bladder pain syndrome (PBPS) is a chronic disease with bothersome symptoms that negatively affect the patients' quality of life. It is characterized by persistent /recurrent pain in the urinary bladder region, and symptoms such as pain worsening with bladder filling, urgency, frequency, or nocturia may accompany.1 Although PBPS is used as the last definition, old nomenclature such as "interstitial cystitis" and "painful bladder syndrome" are still used to define this disease.2 The etiology of PBPS is still unknown, and the diagnosis can still be made by excluding other diseases. The treatment of this disease can be as challenging as its diagnosis. Unfortunately, most current treatment options offer limited benefits.2 This challenging diagnosis and treatment process might encourage patients to refer to various sources to recognize their diseases and seek treatment alternatives.

Studies have shown that the Internet is a widely used resource for obtaining health-related information. YouTube is one of the most used resources for obtaining information on the Internet.3 According to the Alexa database system, YouTube is the most popular website worldwide after Google.4 However, it is still a matter of debate that youtube's videos on any subject are hosted without any verification process. In recent years, articles evaluating the quality of YouTube videos on specific topics have been published one after the other.5-7 However, when this study was planned and carried out, no study evaluated YouTube videos on PBPS. Therefore, we aimed to evaluate the adequacy, quality, and up-to-dateness of YouTube videos on PBPS according to the information they provide.

While establishing our study strategy, firstly, we conducted a Google trends search. According to the results of this search, we found that people mostly adopted the name "interstitial cystitis." We also noticed that the words "primary bladder pain syndrome" and "painful bladder syndrome" were also queried less frequently.8 Any personal account was logged out to avoid single user bias, and searches were conducted anonymously. The first relevant 100 videos from each group were evaluated in each query. Duplicated, non-English, irrelevant, or non-audio-containing videos were excluded. Duration time on YouTube, the number of views, the duration of the video, the number of likes, dislikes, and comments, the number of daily views, and the number of subscribers of the uploaded resource are the data collected from the videos. The videos were classified according to the upload source. The uploaded sources are classified as follows:

  1. University/Non-Profit physicians or Professional organizations
  2. Health information websites
  3. Individual users, Medical advertisement, or for-profit organizations
  4. Patient experience.

The videos were primarily classified as reliable and nonreliable based on the scientifically proven accurate information they contained. The overall quality of the videos was assessed by DISCERN and Global Quality Score.

Of the 300 videos, 175 were excluded. In detail, it was seen that the videos uploaded with the name of interstitial cystitis contained much more relevant videos than those uploaded with the names of PBPS and painful bladder syndrome. This finding was in line with the result of the google trend search, revealing the fact that the disease is still more commonly known as interstitial cystitis.

A total of 62(49.6%) videos were considered reliable and 63 (50.4%) nonreliable. Although about half of the videos are classified as reliable, most of the reliable videos are long and formatted as medical lectures, which are difficult for non-health professionals and patients to obtain information. On the other hand, the number of comments was significantly higher in the patient experience group than in the sources of Universities/Non-Profit physicians or Professional organizations and Health information websites. These findings show that viewers may not distinguish between reliable and nonreliable videos.

Another finding is that the diagnosis process was not mentioned in a significant majority of nonreliable videos. In addition, there were many medical advertising videos for profit expressing that PBPS can only be cured with diet or physical therapy. Although diet and physiotherapy are included in the treatment of PBPS, their therapeutic efficacy and the persistence of their effects are low.

One of the critical shortcomings we identified is the sacral neuromodulation and submucosal bladder wall Botulinum toxin injection, which have promising results in the treatment of PBPS, are rarely mentioned in most of the videos.

Briefly, according to the results of this study, videos hosted on YouTube about PBPS are not informative enough, and they can be misleading. Therefore, short and concise patient-centered videos containing correct and up-to-date information that can be easily understood by the non-health professionals featuring its new terminology (PBPS) should be hosted by the relevant associations with experts.

Written by: Ali Furkan Batur, MD, FEBU, Research Associate, Urology Institution, University Hospitals, Cleveland, United States, Assistant Professor, Department of Urology, Selçuk University, Konya, Turkey

References:

  1. Doggweiler R, Whitmore KE, Meijlink JM, et al. A standard for terminology in chronic pelvic pain syndromes: a report from the chronic pelvic pain working group of the International Continence Society. Neurourol Urodyn. 2017;36:984–1008.
  2. Ghai V, Subramanian V, Jan H, et al. Evaluation of clinical practice guidelines (CPG) on the management of female chronic pelvic pain (CPP) using the AGREE II instrument. Int Urogynecol J. 2021;32:2899–912.
  3. Amante DJ, Hogan TP, Pagoto SL, et al. Access to care and use of the Internet to search for health information: results from the US National Health Interview Survey. J Med Internet Res. 2015;17:e106.
  4. Alexa. The top 500 sites on the web. Available at: https:// www.alexa.com/ topsites. (Accessed 03 Nov 2021.)
  5. Ho M, Stothers L, Lazare D, et al. Evaluation of educational content of YouTube videos relating to neurogenic bladder and intermittent catheterization. Can Urol Assoc J 2015;9:320–54.
  6. Salman MY, Bayar G. Evaluation of quality and reliability of YouTube videos on female urinary incontinence. J Gynecol Obstet Hum Reprod. 2021;50:102200.
  7. Larouche M, Geoffrion R, Lazare D, et al. Mid-urethral slings on YouTube: quality information on the internet? Int Urogynecol J. 2016;27:903–8.
  8. Google trend search. Bladder pain syndrome, Painful bladder syndrome, Interstitial cystitis. Available at:https:// trends. google. com/ trends/ explore?date= all&q= Primary. (Accessed 03 Nov 2021.)
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