Rheumatoid arthritis (RA) is a chronic autoimmune disease, and a significant cause of disability and decreased quality of life.1 Multiple studies identified that patients with more information about their disease have better symptoms control, present improved health outcomes, and are more comfortable with decision-making on their disease.2,3 The 2021 EULAR recommendations for the self-management of patients with inflammatory arthritis highlighted the importance of education to this end.4 For this reason, patients must have access to simple, accurate, and reliable information.3,5

In Latin America, a study identified that 70% of the population has access to the internet (i.e., internet penetration), with 85% of people having access to social media (SoMe).6 Even in the rural population that does not have personal access to the Internet, a significant proportion has relatives who do have internet access.5 SoMe's benefits include the ability to disseminate health information in a scalable way; to encourage the participation of patients in the development of health policies; to provide access to patient opinions and to offer a platform for medical education.5–7 However, SoMe is also a potential source of medical misinformation. There is evidence of a faster distribution of fake news in SoMe when compared with reliable information.7

In a previous study, Singh et al. identified that 55% of videos on YouTube® for English-speaking patients with RA were useful.2 In the case of Spanish-speaking patients, we previously reported that up to 95% of videos on YouTube® on systemic lupus erythematosus (SLE) are useful.8 Nevertheless, an attempt to assess the quality of information for Spanish-speaking patients with RA is lacking.

This study aims to describe the general characteristics and quality of the information shown by YouTube® videos in Spanish about RA, using previously applied and standardized evaluation tools.2,8–13 We evaluate their quality, reliability, and comprehensiveness and describe the differences between reliable and misleading videos, and the differences according with the generating sources.

We performed an analytical observational study evaluating the videos about RA on YouTube® in Spanish. We included videos that presented information on epidemiology, risk factors, symptoms, diagnosis, treatment, or other relevant information on RA. We excluded duplicated videos. The study was considered no-risk research, in agreement with the Helsinki declaration, and was approved by the Institutional Research and Ethics Committee (FM-CIE-004-20).

Most of the information in SoMe for Spanish-speaking patients with RA is useful. However, although useful videos are more frequently watched, other engagement parameters (e.g., popularity index, likes/dislikes) are similar between useful and misleading videos. Quality, reliability, and comprehensiveness scores were higher for useful videos. Most useful videos are uploaded by independent users or government/news agencies, while for-profit companies offer misleading videos; noteworthy, academic sources are less common. To the best of our knowledge, we offer the first evaluation of videos in SoMe for Spanish-speaking patients with RA.

Ten years ago, Singh et al. published the first study evaluating the usefulness of information on YouTube® for English-speaking patients with RA.2 The authors reported that 55% of videos were useful, with no differences in engagement parameters between groups. We found a higher proportion of useful videos with a similar engagement behavior. In contrast, previous studies on the usefulness of the information on YouTube® for Spanish-speaking patients for other immune-mediated inflammatory diseases (IMIDs), such as SLE and inflammatory bowel disease (IBD), reported a higher proportion of useful videos (67.5% for RA vs. 95.1% for SLE or 98% for IBD).8,19 Nevertheless, our study found a higher proportion of useful videos than when contrasting our findings with studies assessing videos in English on Sjögren's syndrome, psoriasis, SLE, and application method of injectable medications such as anti-TNF or methotrexate10,11,13,20–23 (Supplementary Figure 1). Regarding correlation analysis we highlight the positive significant correlation between number of views and engagement parameters such as likes, dislikes, popularity index, and video power index. We consider that the most plausible explanation is the fact that a higher number of views increases the chance of a larger number of likes or dislikes. Further, as both the popularity index and the video power index calculations rely on the number of views, this positive relation would be expected. Interestingly, the fact of a near perfect correlation between the latter and the former is encouraging as it may suggest that both reflect the same adjusted engagement parameter aside from the time available on the internet, by means of a different arithmetic approach; a standardized definition should be sought. In addition, a strong correlation between reliability, comprehensiveness, and quality scores may reflect that, although each evaluates multimedia from different points of view, all are improved when the video is generated using accurate information from a scientific point of view.

Differences observed for videos in Spanish, which have been evaluated since 2020, may be due to the recently adopted policy on the quality of information by YouTube®.24 Onder et al. reported a similar result, with a search performed in April 2021 to assess the quality of videos on psoriatic arthritis on YouTube®.20 Some other articles on relevant issues for IMIDs have been recently published22,25–31; however, their classification methods differ from our approach, thus, limiting comparisons. Regarding engagement parameters between useful and misleading videos, the subtle differences between both groups implies that Spanish-speaking patients with RA may not identify helpful information for their disease. As previously suggested,8 this issue may be overcome by offering high-quality and appealing content. Nonetheless, several studies have shown that YouTube® is not a good source of education for patients. A study on the quality of information of YouTube® videos on knee osteoarthritis and total knee arthroplasty found that 66% of the included videos (n=56) on knee osteoarthritis and 64% of the included videos (n=50) on arthroplasty presented a poor quality, based on an author's generated specific content score.32 A similar study on the diagnosis and treatment of hip arthritis found that 84% of the included videos (n=133) presented a poor quality.33 A study on total knee arthroplasty (90%, n=40) reported an even higher percentage.34 Using a different approach, Fischer et al. reported that 40% of videos (n=13) on knee arthrocentesis were unhelpful, based on a scarce agreement with evidence-based guidelines.35 Lastly, a study similar to ours on the reliability and educational value of YouTube® videos on injuries to the posterior cruciate ligament of the knee found a low-reliability value (mean 2.02, maximum score 4), using the Journal of the American Medical Association benchmark criteria; further, educational value scores were also low using both a nonspecific content score (GQS, mean 2.3) and an author's generated specific content score (mean 2.9, maximum score 18).36 Compared to our results, GQS mean value was lower (2.3 vs. 3), although one should ascertain that the authors reported mean values. In contrast, we reported median values, a fact that limits comparability. Although the authors of this study did not classify videos based on their utility, their results illustrate a low reliability and educational value.

Physician-patient shared-decision is the hallmark of patient-centered care,18 in which patient education plays a pivotal role in achieving informed decision-making to improve outcomes. The current management guidelines of RA support this approach.37,38 SoMe allow the massive distribution of self-paced educational sources. Aside of the relevance of fostering education among patients, the 2021 EULAR recommendations for the self-management of patients with inflammatory arthritis encourage the use of digital healthcare tools to improve self-management and self-efficacy, that, in turn, will improve patients’ outcomes.4 The development of high-quality educational resources should be promoted. Surprisingly, most useful information was uploaded by independent users or government/news agencies, with a relatively small share of videos offered by professional organizations. Studies assessing videos on RA in English reported a similar trend,2 in which academic sources uploaded only 20%. Studies in other IMIDs have replicated these results.12–14,17 Nonetheless, the case of SLE deserves further discussion, as mainly academic sources upload information for both English and Spanish speaking patients.8,13 Drenkard et al.6 offered a detailed description of their experience developing Let's Talk About Lupus, which should be considered a call to action to foster the involvement of academic organizations in the development of evidence-based educational tools. Of interest, Centers of Excellence in RA developed some of the assessed videos in our study, a follow-up approach that has influenced clinical outcomes39–41; thus, suggesting that the shortage of videos from academic sources is increasingly recognized.

Unfortunately, patients with RA are prone to present disabling deformities that limit their productivity potential. In fact, this is one of the variables rheumatologists assess to establish disease activity and treatment effectiveness.42 Consequently, up to 40% of patients with RA may present work disability (i.e., the cessation of paid employment, or receiving working disability benefits, or working less than full time) as early as five years from the diagnosis of the disease.43 Several videos from law firms approached this issue and offered support to obtain early retirement benefits. Rheumatologists and health workers who care for RA patients should be aware of these issues, as evidence-based interventions have been suggested to allow early detection and intervention of at-risk patients, thus, improving their chances of retaining productivity.43 Discussion with patients about work should be sought and supported, where appropriate.4 This topic should be considered a priority in developing educational videos for patients with RA.

Several videos in our research addressed dietary interventions, and the vast majority declared that nutrition could cure RA. Growing evidence supports the relevance of a healthy diet in managing RA, particularly in patients under stable, optimized drug therapy.44 Although evidence to support an improvement in outcomes remains to be elucidated, a healthy diet has been demonstrated to reduce the risk for cardiovascular events45; to date, no evidence of dietary-induced RA remission is available. A similar approach should be made concerning complementary and alternative medicine.46 Further, several videos addressed physiotherapy and physical exercise for patients with RA. High-quality evidence is still lacking; however, as mentioned by Hu et al. in their metanalysis on this topic, “any exercise is better than no exercise”.47 In summary, incorporating wellness practices into managing patients with RA should be a growing priority for rheumatologists,45 as supported by recent EULAR recommendations.4 These issues are of significant relevance to patients; thus, multimedia that contain reliable and peer-reviewed information should be encouraged.

We acknowledge some limitations of our study. First, we evaluated only Spanish-language videos on YouTube®, thus, overlooking information in other languages. Second, we included only multimedia on one SoMe platform. Recent evidence suggests that patients with IMIDs may be more prone to access health information on Facebook®6; thus, future studies should consider its inclusion. Third, we used previously reported scores2,8–13 to assess the quality of multimedia, which report subjective ratings by independent evaluators. Although our concordance test rendered an adequate concordance, in line with previous reports,2,8–13 it is essential to call for the development of validated tools to evaluate the growing wave of health-related multimedia objectively. Fourth, as YouTube® is a dynamic platform renewed daily, a cross-sectional study should capture only “one snapshot”; this limitation is expected for this methodology. Finally, the fact that physicians performed the assessment may not reflect the perception of quality and content that a patient may obtain from a video. Future studies should invite disease-specific educated patients to assess multimedia quality and usefulness.

Most of the information in YouTube® for Spanish-speaking patients with RA is useful; however, patient engagement is similar between useful and misleading content. More substantial involvement of academia in developing high-quality educational multimedia is warranted.

All authors contributed to the conception and design of the study. Material preparation, data collection, and analysis were performed by Julián E. Barahona-Correa, Camilo Rueda-Ortiz, Angel Alberto García, Oscar Muñoz, and Daniel G. Fernández-Ávila. The manuscript was drafted by Julián E. Barahona-Correa and Camilo Rueda-Ortiz; all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript. All authors have participated sufficiently in the work to take public responsibility for appropriate portions of the content.

None declared.

The authors declare no conflict of interest for the present study.