THU509 Tapping Into The Potential Of Social Media To Understand Treatment Experiences Of Survivors Of Rare Cancers: Findings From The Granulosa Cell Tumor (GCT) Survivor Sisters Facebook® Group Member Survey

Disclosure: S. Chu: None. V.M. White: None. M. Alexiadis: None. K. Eroh: None. K. Ackermann: None. S. Rodgers: None. L.M. Langdale: None. N.E. Armour: None. T.W. Jobling: None. P.J. Fuller: None. Background: Engaging with online social media consumer groups for rare cancers may help to develop collaborations between consumers and researchers. This study, a collaboration with the Granulosa Cell Tumour-Survivor Sisters (GCT-SS) Facebook® group, explores the results of their survey of member’s treatment and follow-up experiences. Method: Members of the closed multinational GCT-SS Facebook® group completed a 43-item survey covering symptoms, diagnosis, treatment, recurrence, follow-up, and possible risk factors for GCT. Group members had either adult (aGCT) or juvenile (jGCT) disease. Data was collected via an online survey between 2014 and 2019. Open-ended responses were reviewed by the study team and coded into agreed categorical responses or binary-type variables. Statistical analysis was conducted using SPSS V28. Descriptive statistics (e.g. frequencies) were used to describe the sample in terms of individual, disease and treatment characteristics. Pearson Chi-square or Fisher’s exact test were used to compare proportions between groups (e.g., recurrence or not). Logistic regression was used to examine factors associated with recurrent disease. Results: 744 members (average 4.4 years (SD=5.9) post-diagnosis) participated including 52 with jGCT. 67% had stage I disease and 8% stage III–V at diagnosis, although 30% of aGCT and 25% of jGCT reported recurrent disease at survey completion. 48% of aGCT had laparoscopic surgery, tumor encapsulation was reported by 49% and tumor bagging reported by 29% overall (37% laparoscopic; 8% open). Recurrence rates were higher when the tumor was cut or ruptured (ruptured: p