与罕见癌症在线社交媒体消费者群体互动，可能有助于发展消费者和研究者之间的合作关系。本研究与卵黄细胞肿瘤幸存者姐妹会（GCT-SS）Facebook群体合作，探讨了他们对成员治疗和随访经验的调查结果。闭合的多国GCT-SS Facebook群体成员完成了一个43项调查，包括GCT症状、诊断、治疗、复发、随访和可能的危险因素。群体成员可能患有成人（aGCT）或儿童（jGCT）疾病。数据是在2014年至2019年之间通过在线调查收集的。总共有743名成员（平均诊断后4.4年[标准差=5.9]）参加了调查，其中52名是jGCT。总体上，67%的人在诊断时为I期疾病，有8%的人为III-IV期，尽管30%的aGCT和25%的jGCT在调查结束时报告了复发疾病。48%的aGCT接受了腹腔镜手术，49%报告出现肿瘤囊袋，并且总体上29%报告使用肿瘤袋（37%腹腔镜手术，8%开放手术）。当肿瘤被切割或破裂时，复发率会更高（破裂：p<.001；切割：p=.01）。19%的aGCT接受了化疗，这对于II-III期疾病来说最常见。随着时间的推移，博莱霉素、依托泊苷和顺铂方案变得不太常见（在2015年之前诊断：47% vs.在2015年之后诊断：21%）。这是GCT治疗中最大规模的调查之一。GCT-SS群体的成员报告的治疗模式通常符合临床审计的结果。利用自然形成的消费者群体可能有助于发展护理的证据基础并支持患有GCT卵巢癌的人们。本研究是与卵黄细胞肿瘤幸存者姐妹会（GCT-SS）Facebook群体成员和研究人员合作进行的，以评估成员的治疗和随访经历。总共有743名成员（52名患有儿童GCT）完成了在线调查。总体上，67%的人在诊断时被诊断为I期疾病。治疗模式通常符合临床审计的结果：95%的人接受了手术，而成人GCT患者中有19%接受了化疗。总共有30%报告了复发疾病，其中33%的复发发生在诊断后5年内。利用自然形成的消费者群体可能有助于发展护理的证据基础并支持患有GCT卵巢癌的人们。©2023年作者。癌症由Wiley Periodicals LLC代表美国癌症学会出版。

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 Tumor-Survivor Sisters (GCT-SS) Facebook group, explores the results of their survey of member's treatment and follow-up experiences.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 could have adult (aGCT) or juvenile (jGCT) disease. Data was collected via an online survey between 2014 and 2019.A 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 < .001; cut: 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%).This 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.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.© 2023 The Authors. Cancer published by Wiley Periodicals LLC on behalf of American Cancer Society.