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

Abstract

Abstract 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<.001; cut: p=.01). 19% of aGCT had chemotherapy with this most common for stage II-III disease. BEP (bleomycin, etoposide and cisplatin) protocols became less common over time (diagnosed < 2015: 47% vs diagnosed post-2015: 21%). Conclusions: While there is a growing recognition of the need for involvement of patients and the public across the entire research process, to date consumer involvement has mainly focused on setting research questions/focus and recruitment. The development of information and support groups on social media platforms has provided a unique opportunity for greater collaboration between consumers, researchers and clinicians. This may be of particular benefit when the disease is rare as the global reach of these platforms allows relatively large numbers of people with the condition to connect. Our study suggests the feasibility of engaging with communities that have developed via social media platforms. Members of the GCT-SS group report treatment patterns generally in line with those found from clinical audits. Utilising naturally forming consumer groups may assist with developing the evidence base for care and supporting those living with GCT ovarian cancer. Presentation: Thursday, June 15, 2023