Patient experiences and perceptions of kidney stone surgery: what lessons can be learned from TikTok?

ABSTRACT

Introduction: The aim of this study was to perform an evaluation of patient experiences and perceptions regarding kidney stone surgery on the social media platform TikTok. An increasing number of the public use social media (SoMe) as a platform to share their views regarding their experiences related to surgical treatment. Methods: Using the hashtag #kidneystonesurgery, the 100 most recent video posts as of 01.01.2024 on TikTok were included. As well as demographic data such as gender and location, thematic content was also collected. To achieve this, a previously published framework was used and adapted for application in the setting of kidney stone surgery. This was piloted on 20 sample videos to assess its feasibility before revision and establishment of the final framework. This included the following key areas Pain, Complications, Anxiety, Recovery, Return to work, Finances, Treatment delays, Diet and Prevention and stent complaints. Results: The majority of posts (95%) were from North America, 80% by females and the mean number of video views was 92,826 (range 261-2,000,000). 76% of the videos discussed ureteroscopy (URS). 49% were filmed at the hospital, which was named in 9% of the videos. Top three topics discussed were Recovery (65%), pain (62%) and stents (55%). This was followed by anxiety (39%) and complications (24%). 12% of these videos uploaded by lay people included basic medical information that was wholly incorrect. More than half of the posts (51%) were negative in tone. Treatment delays (5%) and a lack of sufficient preoperative information (4%) were also raised, that appeared to contribute to the negative reports. However, the main cause for negative tone owed to the 80% of the patients (n = 44) who discussed stents that focused their video on the pain suffered from the post operative stent. Conclusion: There is a high level of usership and engagement on TikTok on the subject of kidney stone surgery. The proportion of negative videos is high and much of this is related to the bothersome stent symptoms and complications. This could easily lead to misperceptions among potential patients about the true burden of such adverse events.