病理学家参与肉瘤和罕见肿瘤患者支持小组对 Facebook 的影响：对 542 名患者和家属的调查。

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

机构信息

From the College of Medicine, University of Arkansas for Medical Sciences, Little Rock (Ms Haller); the Department of Pathology and Immunology, Baylor College of Medicine, Houston, Texas (Dr David); Pathology Associates, Huntsville, Alabama (Dr Lee); and the Departments of Pathology & Dermatology, University of Arkansas for Medical Sciences, Little Rock (Drs Shalin and Gardner).

出版信息

Arch Pathol Lab Med. 2018 Sep;142(9):1113-1119. doi: 10.5858/arpa.2017-0408-OA. Epub 2018 Jan 29.

DOI:10.5858/arpa.2017-0408-OA

PMID:29377717

Abstract

CONTEXT

Patients with rare tumors have difficulty finding reliable information about their disease. Facebook patient support groups allow patients to educate one another.

OBJECTIVE

To investigate how these patients perceive the value of pathologists, both in Facebook groups and real-world patient care.

DESIGN

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).

RESULTS

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).

CONCLUSIONS

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.

摘要

背景

患有罕见肿瘤的患者难以获取关于其疾病的可靠信息。脸书患者支持群组允许患者互相教育。

目的

调查这些患者如何看待病理学家的价值，包括在脸书群组和现实世界的患者护理中。

设计

在 12 个脸书患者群组中发布了调查链接：6 个群组中有活跃的病理学家成员（血管肉瘤、上皮样血管内皮细胞瘤、上皮样肉瘤、隆突性皮肤纤维肉瘤[×2]和硬纤维瘤），6 个群组没有“活跃”的病理学家参与（侵袭性血管黏液瘤、软骨肉瘤、尤文肉瘤、平滑肌肉瘤、脂肪肉瘤和骨肉瘤）。

结果

共有 542 人做出回应（403 人为患者）：264 人来自有病理学家的群组，278 人来自没有活跃病理学家参与的群组。在有活跃病理学家的群组中，受访者认为病理学家的帖子帮助他们更好地了解疾病（119 人中的 107 人，90%），并减轻了一些疾病相关的焦虑（119 人中的 92 人，77%）。对于这些群组，98%（119 人中的 117 人）的受访者认为群组中有病理学家是一件好事；83%（232 人中的 192 人）希望有更多的病理学家参与。来自有活跃病理学家的群组的受访者（236 人中的 219 人）比没有活跃病理学家的群组（252 人中的 215 人）更同意：“病理学家是癌症和其他罕见肿瘤患者的患者护理团队的重要组成部分”（P=.008）。