Markman Maurie, Markman Margaret R, Belland Angela, Petersen Judith
University of Texas MD Anderson Cancer Center, Houston, 77030, USA.
J Womens Health (Larchmt). 2006 Apr;15(3):312-8. doi: 10.1089/jwh.2006.15.312.
There is limited information available regarding the characteristics of patients who elect to gather and share information about their malignancy on the Internet.
Using a proprietary decision support program embedded into a number of established websites, individuals entered personal clinical data into disease site profilers designed to provide information about evidence-based treatment options, based on specific characteristics (e.g., stage of disease, prior therapy) provided by the patients. The aggregate data were evaluated to examine the characteristics of patients with gynecological cancer (with a focus on newly diagnosed and recurrent ovarian cancer) using such a tool.
From early 2000 through November 2004, >15,000 patients with gynecological cancer have entered data into one of four profilers: newly diagnosed (n = 5604)/recurrent (n = 2803) ovarian, endometrial, and cervical cancers. Internal data consistency includes similar ages and general health histories of the ovarian and endometrial cancer populations and younger age of the cervical cancer patients. Whereas 90% of the women with ovarian cancer considered themselves to be in "good health," 64% of newly diagnosed vs. only 50% of recurrent disease patients declared their activity level was "normal." Of the recurrent patients, 32% stated they had undergone a secondary surgery. The overall aggressive management philosophy of the recurrent patients in this series is supported by the observation that 33% had received > or =4 prior chemotherapy regimens, 97% desired additional treatment, and 81% were interested in clinical trials.
Women with ovarian cancer seeking assistance from web-based decision support programs may represent a subgroup with unique clinical features compared with the general patient population.
关于选择在互联网上收集和分享其恶性肿瘤信息的患者特征，现有信息有限。
通过嵌入多个知名网站的专有决策支持程序，个人将个人临床数据输入疾病部位分析器，该分析器旨在根据患者提供的特定特征（如疾病分期、既往治疗情况）提供基于证据的治疗方案信息。对汇总数据进行评估，以使用该工具研究妇科癌症患者（重点是新诊断和复发性卵巢癌）的特征。
从2000年初到2004年11月，超过15000名妇科癌症患者将数据输入了四个分析器之一：新诊断（n = 5604）/复发性（n = 2803）卵巢癌、子宫内膜癌和宫颈癌。内部数据一致性包括卵巢癌和子宫内膜癌患者群体的年龄和一般健康史相似，而宫颈癌患者年龄较小。90%的卵巢癌女性认为自己“健康状况良好”，新诊断患者中有64%称其活动水平“正常”，而复发性疾病患者中只有50%如此。在复发性患者中，32%表示他们接受了二次手术。该系列中复发性患者总体积极的治疗理念得到以下观察结果的支持：33%的患者接受了≥4种既往化疗方案，97%的患者希望接受进一步治疗，81%的患者对临床试验感兴趣。
与一般患者群体相比，寻求基于网络的决策支持程序帮助的卵巢癌女性可能代表具有独特临床特征的亚组。
