International Center for Colorectal and Urogenital Care, Division of Pediatric Surgery, Anschutz Medical Campus, Children's Hospital Colorado, 13213 E 16th Ave, Box 323, Aurora, CO, 80045, USA.
Children's Hospital Center for Research in Outcomes for Children's Surgery, Children's Hospital Colorado, Aurora, CO, USA.
Pediatr Surg Int. 2022 Jul;38(7):1047-1055. doi: 10.1007/s00383-022-05139-6. Epub 2022 May 19.
Social media has become a means to allow individuals affected by rare diseases to connect with others. This study aimed to characterize the use of three popular social media platforms by individuals affected by common pediatric surgery index conditions.
A systematic search of Instagram, Facebook, and Twitter was performed using standardized terms for the following pediatric surgical conditions: anorectal malformation, biliary atresia, bronchopulmonary sequestration, congenital diaphragmatic hernia (CDH), congenital pulmonary airway malformation, duodenal atresia, esophageal atresia/tracheoesophageal fistula (EA/TEF), gastroschisis, Hirschsprung disease (HD), and omphalocele. Accounts active within the last year were analyzed and assessed.
A total of 666 accounts were identified. Instagram was the most common platform, but accounts dedicated to support and story sharing were most common on Facebook. Biliary atresia and CDH had the largest communities identified. Support groups were most common among those dedicated to EA/TEF (43.3%, p < 0.001). Most accounts were created by parents, but accounts dedicated to HD had the greatest proportion founded by patients (22.4%, p = 0.04).
Social media use is common among patients and families affected by congenital surgical conditions. Certain diseases have larger communities and support networks. Knowledge about their existence may allow surgeons to direct patients towards supportive communities and resources.
IV.
社交媒体已成为一种让受罕见病影响的个体与他人建立联系的方式。本研究旨在描述受常见小儿外科索引病症影响的个体对三个流行社交媒体平台的使用情况。
使用小儿外科以下病症的标准化术语对 Instagram、Facebook 和 Twitter 进行系统搜索：肛门直肠畸形、胆道闭锁、肺隔离症、先天性膈疝（CDH）、先天性肺气道畸形、十二指肠闭锁、食管闭锁/气管食管瘘（EA/TEF）、腹裂、先天性巨结肠（HD）和脐膨出。分析和评估了过去一年内活跃的账户。
共确定了 666 个账户。Instagram 是最常见的平台，但 Facebook 上支持和故事分享的账户最为常见。胆道闭锁和 CDH 确定的社区最大。支持小组在专门针对 EA/TEF 的小组中最为常见（43.3%，p<0.001）。大多数账户由父母创建，但专门针对 HD 的账户中有最大比例由患者创建（22.4%，p=0.04）。
患有先天性外科病症的患者和家庭普遍使用社交媒体。某些疾病有更大的社区和支持网络。了解它们的存在可能使外科医生能够将患者引导至支持性社区和资源。
IV。
