Aims: Online interventions for brain tumour patients have the potential to transgress geographic, physical and psychological barriers to healthcare, and to facilitate treatment, support and education for patients within convenient timeframes and their own environment. Our published literature review examining online interventions for cancer patients found current interventions demonstrated mixed efficacy when rigorously evaluated. The current study is a needs assessment of online resources for brain tumour patients, undertaken with a view to creating an online therapeutic community. The survey considers social media use, patient demographics and quality of life (FACT-B).
Methods: The survey has been created using SurveyMonkey software administered on iPads. Participants include those >18 years of age with a diagnosis of primary brain tumour, attending the Royal Melbourne Hospital Neuro-oncology clinic.
Results: 201 patients with primary brain tumours were surveyed between 2014 and 2016. 55.7% were female and 61.7% were aged greater than 40 years. 85.9% of patients used the Internet and of those 71% had looked up information about brain tumours. Patients used a number of social media platforms for information, communication or interaction related to their brain tumour. Social networking sites (SNS) were most frequently used (32.8%), followed by wikis (28.1%) and blogs (13.2%). 69.2% of those using social media found SNS valuable for information, communication or interaction related to their brain tumour. Furthermore, patients reported many determinants of QoL to be positively affected by use of SNS, reporting that SNS helped their ability to take in new information, ability to sleep, ability to enjoy life and ability to participate in social activities.
Conclusions: Results suggest social media plays a powerful role in self-management for patients with brain tumours. This information emphasizes the importance of social media for patients, and will help guide the creation of a specialized platform to help these patients with self-management.