Inci Melisa Guelhan, Ilter Ebru, Roser Eva, Dimitrova Desislava, Kofiah Reema, Stoklossa Cindy, Karaman Murat, Goerling Ute, Plett Helmut, Aktas Bahriye, Mangler Mandy, Lanowska Malgorzata, Oskay-Oezcelik Guelten, Barinoff Jana, Wimberger Pauline, Pirmorady-Sehouli Adak, Schmalfeldt Barbara, Mayr Doris, Letsch Anne, Maass Nicolai, Harter Philipp, Mahner Sven, Hanf Volker, Hasenburg Annette, Sehouli Jalid
Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Berlin, Germany; Humboldt-Universität zu Berlin, Department of Gynecology with Center for Oncological Surgery, Charité Comprehensive Cancer Center, Berlin, Germany.
Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Berlin, Germany; Humboldt-Universität zu Berlin, Department of Gynecology with Center for Oncological Surgery, Charité Comprehensive Cancer Center, Berlin, Germany.
Int J Gynecol Cancer. 2025 Jul 19:102008. doi: 10.1016/j.ijgc.2025.102008.
This study aimed to assess the experiences and expectations regarding advance directives among patients with gynecological cancer, with an additional focus on patients with migration backgrounds.
An anonymous, self-administered questionnaire comprising 38 multiple-choice questions on advance directives was distributed online and in paper form from May 2019 to April 2021 across Germany. Participants included women diagnosed with various gynecological tumors. The survey was available in German, Turkish, Arabic, and Russian to capture culture-specific differences.
Out of 718 participants, 355 (49.4%) reported having an advance directive. Patients with an advance directive were significantly older (64.5 years) compared to those without (56.0 years, p < .0001). Advanced tumor stage (Fédération Internationale de Gynécologie et d'Obstétrique III and IV) was not significantly associated with having an advance directive (OR 0.82, 95% CI 0.49 to 1.35, p = .43). Compared to women with ovarian/fallopian tube/peritoneal cancer, those with cervical cancer (OR 0.7, 95% CI 0.35 to 1.39, p = .31), endometrial cancer (OR 0.43, 95% CI 0.16 to 1.12, p = .09), and vulvar cancer (OR 0.58, 95% CI 0.16 to 2.04, p = .39) were less likely to have an advance directive. A total of 56.8% of patients believed their family doctor should initiate end-of-life care discussions. Among the 18.2% of women with migration backgrounds, there was a lower likelihood of having an advance directive (OR 0.61, 95% CI 0.35 to 1.03, p = .07) and a significantly higher desire for information and documentation about advance directives in their native language (p = .0001). A total of 330 (48.4%) patients reported that a conversation with their physician would be the most important way to receive information about end-of-life care and advanced directives.
This study highlights a substantial need for enhanced information and proactive discussions about end-of-life care among patients with gynecological malignancies, particularly emphasizing the pivotal role of family doctors in these conversations. Notably, women with migration backgrounds are disproportionately disadvantaged in accessing and understanding advance directives, underscoring the urgent need for information and documents about advance directives in their native language. It is therefore recommended that the medical team routinely and proactively address these relevant topics in discussions with their patients and that clinical guidelines should also reflect this.
本研究旨在评估妇科癌症患者对预立医疗指示的体验和期望，特别关注有移民背景的患者。
2019年5月至2021年4月期间，在德国通过网络和纸质形式分发了一份包含38个关于预立医疗指示的多项选择题的匿名自填问卷。参与者包括被诊断患有各种妇科肿瘤的女性。该调查问卷有德语、土耳其语、阿拉伯语和俄语版本，以捕捉特定文化差异。
在718名参与者中，355名（49.4%）报告有预立医疗指示。有预立医疗指示的患者明显比没有的患者年龄大（64.5岁对56.0岁，p <.0001）。肿瘤晚期（国际妇产科联盟III期和IV期）与有预立医疗指示无显著关联（比值比0.82，95%置信区间0.49至1.35，p =.43）。与卵巢/输卵管/腹膜癌患者相比，宫颈癌患者（比值比0.7，95%置信区间0.35至1.39，p =.31）、子宫内膜癌患者（比值比0.43，95%置信区间0.16至1.12，p =.09）和外阴癌患者（比值比0.58，95%置信区间0.16至2.04，p =.39）有预立医疗指示的可能性较小。共有56.8%的患者认为他们的家庭医生应该发起临终关怀讨论。在有移民背景的18.2%的女性中，有预立医疗指示的可能性较低（比值比0.61，95%置信区间0.35至1.03，p =.07），并且对以其母语提供的关于预立医疗指示的信息和文件的需求显著更高（p =.0001）。共有330名（48.4%）患者报告与医生交谈是获取临终关怀和预立医疗指示信息的最重要方式。
本研究强调，妇科恶性肿瘤患者对临终关怀的信息和积极讨论有很大需求，尤其强调家庭医生在这些讨论中的关键作用。值得注意的是，有移民背景的女性在获取和理解预立医疗指示方面处于不成比例的劣势，这凸显了迫切需要以其母语提供关于预立医疗指示的信息和文件。因此，建议医疗团队在与患者的讨论中常规且积极地涉及这些相关话题，并且临床指南也应反映这一点。
