(325) A Descriptive Analysis of Digital Resources for Educating Sickle Cell Patients About Priapism

Abstract

Abstract Introduction Men with sickle cell disease (SCD, HbSS or HbSC hemoglobinopathy) are at increased risk of priapism via increased cell surface adhesion molecule expression and blunted vasodilatory responses to nitric oxide. Previous studies have suggested that priapism knowledge is poor among men with SCD; however, studies have yet to characterize public-facing priapism educational resources. Objective To describe key features of online educational resources targeted to priapism patients with SCD in the US. Methods In March 2023, we searched the following keywords and terms using the Google search engine and search features within Facebook, YouTube, and TikTok: “painful erection”, “priapism”, “priapism patient education”, “priapism for patients”, and “priapism sickle cell patient”. Searches were performed via a computer located in Manhattan, New York and in the English language only. Results Google search results differed considerably when searching “painful erection” versus “priapism” and are depicted in Table 1: the former directed users to telehealth commercial websites while the latter directed users to websites hosted by healthcare and professional organizations and medical reference sites which primarily discussed etiology and need for prompt diagnosis of the condition. YouTube search results overwhelmingly focus on discussion of diagnosis, pathophysiology, and management of priapism, and most of these appear designed for a medical or medically-literate audience; however, when querying for “priapism sickle cell patient”, users are directed to patient testimonial or documentary style videos. The results of a Facebook pages search seemed intended for student education and associated with low quality media material. An equivalent search performed on Tik Tok yields videos with noticeably different characteristics, namely: starring and created by “younger” urologists and hematologists, depicting a diverse cohort of providers and patients, written/spoken in Spanish and Portuguese, informal dialogue, increased use of Q&A format. Compared to YouTube videos, TikTok posts were more recent, received more views, and were associated with more comments. Conclusions Our exploratory search for priapism educational resources revealed differences in content, tone, and format between online sites and mobile platforms. Based on view and comment statistics, it appears as though mobile platforms such as TikTok have an increasing role in disseminating knowledge about priapism. However, it remains unclear as to whether individual modalities are well-suited to deliver information in a specific disease phase (e.g. preventative, acute, or chronic). Importantly, the impact of word-of-mouth and private provider-to-patient interactions cannot be estimated by this methodology. Disclosure No.