Exploring the Needs and Preferences of Patients with Port-Wine Stain and Associated Syndromes: A Qualitative Analysis of Social Media Discussions
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.
Authors
- Xinjin Liu (ORCID: https://orcid.org/0009-0004-2901-8041)
- Yifei Cheng (ORCID: https://orcid.org/0000-0003-2894-9034)
- D M Li (ORCID: https://orcid.org/0009-0004-8271-1988)
- Yousheng Duan
- Xian Jiang (ORCID: https://orcid.org/0000-0001-5109-6055)
- Beenu Maharjan (ORCID: https://orcid.org/0009-0004-7598-6449)
- Liu Yichen
- Long Lin
- Jie Zeng (ORCID: https://orcid.org/0000-0001-8809-888X)
- Xu Liu (ORCID: https://orcid.org/0009-0003-7620-7323)
- Min-kyu Kim
- Linghong Guo (ORCID: https://orcid.org/0000-0002-9248-5070)
- He Qin
Institutions
- Sichuan University (CN)
- West China Hospital of Sichuan University (CN)
Publication Details
- Journal
- Patient Preference and Adherence
- Published
- 2025-09-01
- DOI
- https://doi.org/10.2147/ppa.s541439
- Citations
- 1
- Primary Topic
- Social Media in Health Education
- Type
- article
- Field-Weighted Citation Impact
- 2.17
Funders
- Sichuan University
- Ningbo Municipal Bureau of Science and Technology
- West China Hospital, Sichuan University