How social media can help to understand treatment experiences of survivors of rare cancers: Findings from the Granulosa Cell Tumor (GCT) Survivor Sisters Facebook group member survey

BackgroundEngaging 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 Tumor-Survivor Sisters (GCT-SS) Facebook group, explores the results of their survey of member's treatment and follow-up experiences. MethodsMembers 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 could have adult (aGCT) or juvenile (jGCT) disease. Data was collected via an online survey between 2014 and 2019. ResultsA total of 743 members (average 4.4 years [SD = 5.9] post-diagnosis) participated including 52 with jGCT. A total of 67% had stage I disease and 8% had stage III-IV at diagnosis, although 30% of aGCT and 25% of jGCT reported recurrent disease at survey completion. A total of 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 p = .01). A total of 19% of aGCT had chemotherapy with this most common for stage II-III disease. Bleomycin, etoposide, and cisplatin protocols became less common over time (diagnosed before 2015: 47% vs. diagnosed post-2015: 21%). ConclusionsThis is one of the largest surveys of GCT treatment. Members of the GCT-SS group report treatment patterns generally in line with those found from clinical audits. Using naturally forming consumer groups may assist with developing the evidence base for care and supporting those living with GCT ovarian cancer. Plain language summary This study is a collaboration between members of Granulosa Cell Tumor-Survivor Sisters (GCT-SS) Facebook group and researchers to assess members' experiences of treatment and follow-up.A total of 743 members (52 with juvenile GCT) completed an online survey.A total of 67% had stage I disease at diagnosis.Treatment patterns were generally in line with those found from clinical audits: 95% had surgery and 19% of those with adult GCT had chemotherapy.A total of 30% reported recurrent disease, with recurrence occurring within 5 years of diagnosis for 33%.Using naturally forming consumer groups may assist with developing the evidence base for care and supporting those living with GCT ovarian cancer.