The importance of social media for patients and families affected by congenital anomalies: a Facebook cross-sectional analysis and user survey

Abstract Background We aimed to define characteristics and needs of Facebook users in relation to congenital anomalies. Methods Cross-sectional analysis of Facebook related to four congenital anomalies: Anorectal Malformation(ARM), Congenital Diaphragmatic Hernia(CDH), Congenital Heart Disease(CHD) and Hypospadias/Epispadias(HS/ES). A keyword search was performed to identify relevant Groups/Pages. An anonymous survey was posted to obtain quantitative/qualitative data on users and their healthcare needs. Results 54 Groups and 24 Pages were identified (ARM:10 Groups; CDH:9 Groups, 7 Pages; CHD:32 Groups, 17 Pages; HS/ES: 3 Groups), with 16,191 Group members and 48,766 Page likes. 868/1103 (79%) of respondents were parents. Male:female ratio 1:10.9. 65% of users were 26-40 years old. Common reasons for joining these Groups/Pages included: seeking support, education, making friends, providing support to others. 932/1103 (84%) would like healthcare professionals (HCPs) actively participating in their Group. 31% of the respondents felt they did not receive enough support from their healthcare system. 97% of the respondents would like to join a Group linked to their primary hospital. Conclusions Facebook Groups/Pages related to congenital anomalies are highly populated and active. There is a need for HCPs and policy makers to better understand and participate in social media to support families and improve patient care.