Brain tumour patients' use of social media for disease management: Current practices and implications for the future.

Abstract

The role of social media in disease management is evolving. We aimed to define current use of social media for patients with primary brain tumours. This was a single-centre cross-sectional prospective study; a questionnaire was administered on electronic tablets to patients in the Outpatient Department of Royal Melbourne Hospital. Of the 201 participants, 55.7 % were female and 61.2 % were aged 30-59 years. The Internet was used by 84.5 % of participants, 70.6 % of those used social media. This included social networking sites (33.1 %), wikis (28.1 %) and blogs (14.0 %) to access information, for communication or for interaction related to their brain tumour. Participants indicated preferences for privacy and flexibility and valued when health professionals contributed. Subjective social functioning and activities of daily living benefits were reported from use, however no difference in Health Related Quality of Life was found between social media users and non-users. This study is the first to examine social media use in disease management for brain tumour patients and defines its use and potential for targeted online interventions. Through identifying concerns regarding current social media sites and determining preferences of patients we have created recommendations to direct design of online content for patients.