Social media as source of information for Spanish-speaking patients with systemic lupus erythematosus

Abstract

Introduction Although patients with systemic lupus erythematosus (SLE) may benefit from health-care information in social media (SoMe), they may also be prone to misleading information. An assessment of the reliability, comprehensiveness, and quality of information uploaded to SoMe for Spanish-speaking patients with SLE is lacking. Methods This analytical observational study evaluates the videos uploaded to YouTube® in Spanish about SLE. Information about video length, engagement (i.e., views and likes), time on the internet, popularity index, and source was retrieved, and an evaluation on reliability, comprehensiveness, and quality was performed using standardized scores. Results One hundred eighty-six videos were included in the analysis. Most videos were considered as useful (87%) or useful patient opinion (8.1%), whereas only 2.2% were considered misleading and 2.7% as misleading patient opinion. The number of views (Median 7207 vs 113,877, p = .012), popularity index (Median 13.8 vs 168.7, p < .001), number of likes (Median 155 vs 3400, p < .001), and number of dislikes (Median 3 vs 138, p = .004) were higher for misleading videos. The videos uploaded by independent users had a higher engagement than those from government or news agencies, professional organizations or academic channels. Misleading videos and those uploaded by independent users had lower rates of reliability, comprehensiveness and quality ( p < .001). Conclusions Most of the information shown in YouTube® videos on SLE tends to be useful. However, audience engagement parameters are larger for misleading videos. Exploring the qualitative features of the most popular videos is necessary to establish what features are more engaging for the audiences and to improve the content and popularity of reliable videos on chronic diseases.

Methods for Analyzing the Contents of Social Media for Health Care: Scoping Review

“…The videos were classified as useful or useless based on their content and quality score. Furthermore, 2 (22.2%) studies [ 69 , 130 ] simultaneously used DISCERN criteria and the GQS to analyze YouTube videos of specific content, understanding the quality and benefits of the videos. Anastasio et al [ 94 ] used 2 separate scoring systems—DISCERN criteria and the Ankle Sprain Exercise Education Score (ASEES)—to evaluate the reliability, quality, and educational applicability of videos related to ankle sprain exercises.…”

“…Researchers corresponded video content and quality to specific rating scales and used statistical methods to calculate and analyze scores. DISCERN criteria [ 34 , 69 , 77 , 94 , 124 , 130 , 151 ] and the GQS [ 69 , 130 , 141 ] were the most commonly used scales. Other qualitative methods were also commonly used, in addition to scoring tables.…”

“…Health education [ 170 ] usually affects patients in relation to disease knowledge, symptoms, prevention and treatment guidance, and error information [ 34 , 41 , 67 , 69 , 73 , 77 ,​ 94 , 97 , 107 , 119 , 124 , 130 , 138 , 141 , 151 ]. In patient-oriented health education materials published by professionals and institutions, video is the main form and the overall quality is not satisfactory [ 67 , 77 , 94 , 130 , 141 , 151 ].…”

O conteúdo e as informações de vídeos publicados no Youtube sobre doença celíaca são adequados?

“…Outro estudo realizado porBarahona-Correa et al (2022) avaliou os vídeos enviados ao YouTube ® em espanhol sobre lúpus eritematoso sistêmico e concluiu que a maioria das informações apresentadas nos vídeos do YouTube ® sobre essa doença autoimune tendem a ser úteis. No entanto, os parâmetros de engajamento do público são maiores para vídeos enganosos.Observaram que explorar os recursos qualitativos dos vídeos mais populares é necessário para estabelecer quais recursos são mais atraentes para o público e melhorar o conteúdo e a popularidade de vídeos confiáveis sobre doenças crônicas.Um dado preocupante, que exemplifica a problemática contida nos parágrafos anteriores, é que a grande maioria dos vídeos não menciona informações adicionais a respeito de quem é acometido pela DC, quem está em risco, a partir de qual idade a doença pode se manifestar, alterações na rotina e nas relações sociais, bem como, alterações na qualidade de vida.…”