Impact of Pathologist Involvement in Sarcoma and Rare Tumor Patient Support Groups on Facebook: A Survey of 542 Patients and Family Members

Summary

Patients with rare tumors have difficulty finding reliable information about their disease. Facebook patient support groups allow patients to educate one another. To investigate how these patients perceive the value of pathologists, both in Facebook groups and real-world patient care. Survey links were posted in 12 Facebook patient groups: 6 with an active pathologist member (angiosarcoma, epithelioid hemangioendothelioma, epithelioid sarcoma, dermatofibrosarcoma protuberans [_2], and desmoid fibromatosis), and 6 without "active" pathologist involvement (aggressive angiomyxoma, chondrosarcoma, Ewing sarcoma, leiomyosarcoma, liposarcoma, and osteosarcoma). Pathologist involvement in Facebook patient groups appears to positively influence patient perception of the importance of pathologists. We hope thesedata will encourage more pathologists to participate in Facebook patient support groups.