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

A healthcare social media research article published in Archives of Pathology & Laboratory Medicine, August 31, 2018

Title
Impact of Pathologist Involvement in Sarcoma and Rare Tumor Patient Support Groups on Facebook: A Survey of 542 Patients and Family Members
Authors (alpha)
Jasmine Haller, Jerad M. Gardner, Marjorie Parker David, Nathan E. Lee, Sara C. Shalin
Published
August 31, 2018
Journal
Archives of Pathology & Laboratory Medicine
Impact Factor
2.838
DOI
10.5858/arpa.2017-0408-OA
Pubmed
29377717
Altmetric
A healthcare social media research article published in Archives of Pathology & Laboratory Medicine, August 31, 2018

Abstract

- 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). - A total of 542 people responded (403 were patients): 264 from groups with a pathologist, and 278 from groups without active pathologist involvement. Of groups with an active pathologist, respondents agreed the pathologist's posts helped them better understand their disease (107 of 119; 90%) and relieved some of their disease-related anxiety (92 of 119; 77%). And for these groups 98% (117 of 119) of respondents agreed that having a pathologist in their group was a good thing; 83% (192 of 232) wanted more pathologists involved. More respondents from groups with an active pathologist (219 of 236; 93%) than without one (215 of 252; 85%) agreed: "pathologists are an important part of the patient care team for patients with cancer and other rare tumors" ( P = .008). - This study is the first to evaluate the impact of pathologist interaction with Facebook patient support groups and to assess perceptions about the specialty of pathology from a large group of patients with rare tumors. Pathologist involvement in Facebook patient groups appears to positively influence patient perception of the importance of pathologists. We hope these data will encourage more pathologists to participate in Facebook patient support groups.


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Altmetric

The Altmetric Attention Score is based on the attention a research article gets on the internet. Each coloured thread in the circle represents a different type of online attention and the number in the centre is the Altmetric Attention Score. The score is calculated based on two main sources of online attention: social media and mainstream news media.