Ulloa Ruben, Tam Benjamin, Orozco Francis Reyes, Castellanos Carlos X, Chang Michael T, Hur Kevin
Caruso Department of Otolaryngology-Head and Neck Surgery Keck School of Medicine of the University of Southern California Los Angeles California USA.
Department of Otolaryngology-Head and Neck Surgery Stanford School of Medicine Stanford California USA.
OTO Open. 2023 Nov 7;7(4):e88. doi: 10.1002/oto2.88. eCollection 2023 Oct-Dec.
To characterize the users of the largest chronic rhinosinusitis (CRS) online support communities (OSCs), describe the perceived benefits of OSCs for their users, and understand how patient medical decision making is affected by membership in OSCs.
Cross-sectional online survey.
Online.
A cross-sectional online survey was adapted from the existing literature on patient support groups and modified for CRS patients. The survey was posted on multiple Facebook/Reddit groups aimed at providing support toward patients with CRS. Survey data was collected over 3 months and analyzed thereafter.
There were 127 total participants. The majority were female (65.35%), white (76.98%), and the median age was 38 years. Just under half of patients had nasal polyps (48.67%) and 54.54% had undergone surgery. Many participants (69.42%) reported engaging in the OSC at least multiple times per month. The most common reason for joining an OSC was to learn tips on how to manage CRS (89.7%) and the most achieved goal from membership was hearing from others undergoing a similar experience (79.5%). Involvement in an OSC impacted knowledge of CRS in 87.41% of participants. Most users (81.1%) would recommend membership in an OSC and 54.33% reported the OSC influenced their medical decision-making.
A majority of patients with CRS who frequently engage in an OSC for CRS have a positive experience. OSCs are a resource that CRS patients utilize to manage their disease.
描述最大的慢性鼻-鼻窦炎（CRS）在线支持社区（OSC）的用户特征，阐述OSC对其用户的感知益处，并了解患者医疗决策如何受到OSC成员身份的影响。
横断面在线调查。
在线。
横断面在线调查改编自关于患者支持小组的现有文献，并针对CRS患者进行了修改。该调查发布在多个旨在为CRS患者提供支持的Facebook/Reddit群组上。调查数据收集了3个月，之后进行分析。
共有127名参与者。大多数为女性（65.35%）、白人（76.98%），中位年龄为38岁。略低于半数的患者有鼻息肉（48.67%），54.54%的患者接受过手术。许多参与者（69.42%）报告每月至少多次参与OSC。加入OSC最常见的原因是学习管理CRS的技巧（89.7%），从成员身份中最常实现的目标是听到其他有类似经历的人的情况（79.5%）。参与OSC对87.41%的参与者的CRS知识有影响。大多数用户（81.1%）会推荐加入OSC，54.33%的用户报告OSC影响了他们的医疗决策。
大多数经常参与CRS的OSC的患者有积极的体验。OSC是CRS患者用于管理其疾病的一种资源。
