Introduction: Patient awareness of postoperative lymphedema in the field of gynecologic oncology has been poorly documented in the international literature. We wished to capture and document the awareness among gynecological cancer survivors about postoperative lymphedema, including aspects such as the adequacy of perioperative counseling, management, and quality of life. Methods: A web-based survey comprising 25 multiple-choice questions was distributed to gynecological cancer advocacy groups within the European Network of Gynecological Cancer Advocacy Groups (ENGAGe) group. The survey was validated in a pilot group of gynecological patients prior to distribution. Results: Overall, 386 women from 20 countries completed the questionnaire. Only half of the patients (n= 211) knew what lymphedema is, whereas 52% of the respondents stated that they were never informed at their pre-operative assessment about the potential risk of developing lymphedema. Fifty-three percent of those women who were informed about the risk and management of lymphedema received information through self-initiative, connecting mainly with patient groups or online. Approximately 84% of patients with lymphedema reported that they informed their doctor about their symptoms. Ninety-four patients (55.3%, which is not 55% of the 386) were treated for lymphedema. Forty-five women out of 136 reported that lymphedema significantly affected their everyday lives. Discussion: We report a large lack of awareness and a significant gap of knowledge about the risks and treatment options related to postoperative lymphedema among gynecological cancer survivors. Institutional practice routines and awareness among professionals need to be urgently recalled and adapted to adequately inform and support gynecological cancer patients.
引言：在国际文献中，妇科肿瘤领域患者对术后淋巴水肿的认知情况鲜有记载。本研究旨在调查并记录妇科癌症幸存者对术后淋巴水肿的认知状况，包括围手术期咨询的充分性、管理措施及生活质量等方面。方法：通过欧洲妇科癌症倡导组织网络向相关倡导团体发放一份包含25道选择题的网络问卷。问卷在正式发放前已在一组妇科患者中进行了试点验证。结果：共有来自20个国家的386名女性完成了问卷。仅半数患者（n=211）了解淋巴水肿的定义，而52%的受访者表示术前评估时从未被告知发生淋巴水肿的潜在风险。在获知淋巴水肿风险及管理信息的患者中，约53%是通过主动联系患者团体或网络渠道自行获取信息。约84%的淋巴水肿患者表示曾向医生告知症状。94名患者（占淋巴水肿患者群体的55.3%，非总样本386人的55%）接受了淋巴水肿治疗。136名患者中有45人报告淋巴水肿对其日常生活造成显著影响。讨论：本研究表明妇科癌症幸存者对术后淋巴水肿的风险及治疗选择存在严重认知不足与知识缺口。亟需重新审视医疗机构常规实践并提升专业人员的认知水平，以期为妇科癌症患者提供充分的信息支持与医疗照护。
肿瘤(癌症)患者之家