Exploring the Needs and Preferences of Patients with Port-Wine Stain and Associated Syndromes: A Qualitative Analysis of Social Media Discussions.

PURPOSE

Patients with port-wine stain (PWS) and related syndromes often face multifaceted challenges in disease management, including prolonged treatment cycles, appearance-related distress, and psychological burdens. Social media has become an important platform for these individuals to obtain information and share experiences. However, there is a lack of systematic qualitative research exploring their genuine needs. This study analyzes content from social media to identify patients' core concerns during the diagnostic and therapeutic process, providing both theoretical foundations and practical references for developing patient-centered care models.

METHODS

This study systematically analyzed PWS-related posts published between 2010 and 2023 across open social media platforms including Twitter, Facebook, and Baidu. A stratified sampling method was applied, and natural language processing was used to extract keywords and thematic sentences. Through expert review and AI-assisted classification, core patient needs in disease management were qualitatively summarized and categorized.

RESULTS

A total of 1528 social media posts were analyzed, yielding 4,190 extracted keywords categorized into six major themes. Treatment-related concerns were the most prominent (30.04%), particularly focusing on treatment choices, side effects, and delayed efficacy. Diagnostic confusion was also frequently mentioned (24.41%). A significant number of posts conveyed emotional distress and a strong desire for shared experiences, with emotional support themes accounting for 4.19%, highlighting their importance. Some patients proactively shared treatment journeys, contributing to a supportive and empathetic community atmosphere.

CONCLUSION

This study distilled key needs from authentic patient expressions and found that beyond clinical diagnosis and treatment, PWS patients also highly value emotional support and anxiety relief regarding relapse. These findings underscore the necessity of building patient-centered care systems that integrate emotional and psychological support while managing treatment expectations. Future studies should combine quantitative research and clinical data to refine variable analyses and develop educational and intervention strategies tailored to real online patient needs.