Use of social media to conduct a cross-sectional epidemiologic and quality of life survey of patients with neuroendocrine carcinoma of the cervix: A feasibility study
Use of social media to conduct a cross-sectional epidemiologic and quality of life survey of patients with neuroendocrine carcinoma of the cervix: A feasibility study
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DOI：
10.1016/j.ygyno.2013.10.015
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发表时间：
2014-01-01
影响因子：
4.7
通讯作者：
Frumovitz, Michael
中科院分区：
文献类型：
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作者：
Zaid, Tarrik;Burzawa, Jennifer;Frumovitz, Michael
目标。为了确定使用社交媒体对罕见妇科肿瘤患者进行横断面流行病学和生活质量研究的可行性，我们使用facebook对宫颈神经内分泌肿瘤患者进行了调查。经我们的机构审查委员会批准后，在Facebook上确定了一个子宫颈神经内分泌肿瘤患者支持小组。小组成员被要求完成一项调查，包括84个评估临床表现的问题；治疗;复发;生活质量；和性功能，结果该调查发布了30天，在此期间，来自4大洲8个国家的57名女性在51个中心接受了治疗。所有的应答者都提供了详细的临床和肿瘤病史。平均年龄38.5岁。分期分布为I期，36例（63%）；Ii, 13 (23%)；Iii, 2 (4%)；IV, 6（11%）。49例（86%）为小细胞瘤，8例（14%）为大细胞瘤。45名应答者（79%）已完成初级治疗，无疾病证据。5例（9%）复发，3例（5%）治疗后疾病持续，4例（7%）仍在治疗中。41例患者（72%）在就诊时报告有症状。37例（65%）患者接受了多模式初级治疗。生活质量测试显示焦虑得分较高，焦虑和癌症对功能和情感健康的负面影响也较高。性功能评分在被调查者和PROMIS参考人群之间没有显著差异。利用社交媒体网络对罕见妇科肿瘤患者进行流行病学和生活质量研究是可行的，可以高效、快速地开展此类研究。(C) 2013爱思唯尔公司版权所有。
Objective. To determine the feasibility of using social media to perform cross-sectional epidemiologic and quality-of-life research on patients with rare gynecologic tumors, we performed a survey of patients with neuroendocrine tumors of the cervix using Facebook.Methods. After approval from our Institutional Review Board, a support group of patients with neuroendocrine tumors of the cervix was identified on Facebook. Group members were asked to complete a survey comprising 84 questions evaluating clinical presentation; treatment; recurrence; quality of life; and sexual function.Results. The survey was posted for 30 days, during which 57 women responded from 8 countries across 4 continents treated at 51 centers. All respondents provided a detailed clinical and tumor history. The mean age was 38.5 years. The stage distribution was stage I, 36 patients (63%); II, 13 (23%); III, 2 (4%); and IV, 6 (11%). Forty-nine patients (86%) had small cell and 8 (14%) had large cell tumors. Forty-five of the respondents (79%) had completed primary therapy and were without evidence of disease. Five (9%) had recurrence, 3 (5%) had persistent disease after therapy, and 4 (7%) were still under treatment. Forty-one patients (72%) reported symptoms at time of presentation. Thirty-seven patients (65%) received multimodality primary therapy. Quality of life instruments demonstrated high scores for anxiety and a negative impact of anxiety and cancer on functional and emotional well-being. Sexual function scores did not differ significantly between respondents and the PROMIS reference population.Conclusions. Use of a social media network to perform epidemiologic and quality of life research on patients with rare gynecologic tumors is feasible and permits such research to be conducted efficiently and rapidly. (C) 2013 Elsevier Inc. All rights reserved.