Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin and Berlin Institute of Health, Department of Gynecology, Charité European Competence Center for Ovarian Cancer, Berlin; North-Eastern German Society of Gynecological Oncology (NOGGO), Berlin, Germany.
Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin and Berlin Institute of Health, Department of Gynecology, Charité European Competence Center for Ovarian Cancer, Berlin.
Ann Oncol. 2018 Apr 1;29(4):910-916. doi: 10.1093/annonc/mdy037.
The primary aim of this study was to investigate information needs and treatment preferences of patients with ovarian cancer, focusing especially on physician-patient relationship and treatment.
A questionnaire was developed based on the experiences of the national German survey 'Expression II', and was provided to patients with ovarian cancer either at initial diagnosis or with recurrent disease via Internet (online-version) or as print-out-version.
From December 2009 to October 2012, a total of 1830 patients with ovarian cancer from eight European countries (Austria, Belgium, France, Germany, Italy, Poland, Romania, Spain) participated, 902 (49.3%) after initial diagnosis and 731 (39.9%) with recurrent ovarian cancer. The median age was 58 years (range 17-89). Nearly all patients (96.2%) had experienced upfront surgery followed by first-line chemotherapy (91.8%). The majority of patients were satisfied with the completeness and comprehensibility of the explanation about the diagnosis and treatment options. The three most important aspects, identified by patients to improve the treatment for ovarian cancer included: 'the therapy should not induce alopecia' (42%), 'there must be more done to counter fatigue' (34.5%) and 'the therapy should be more effective' (29.7%). Out of 659 (36%) patients, who were offered participation in a clinical trial, 476 (26%) were included.
This study underlines the high need of patients with ovarian cancer for all details concerning treatment options irrespective of their cultural background, the stage of disease and the patient's age. Increased information requirements regarding potential side effects and treatment alternatives were recorded. Besides the need for more effective therapy, alopecia and fatigue are the most important side effects of concern to patients.
本研究的主要目的是调查卵巢癌患者的信息需求和治疗偏好，重点关注医患关系和治疗。
根据德国全国性调查“Expression II”的经验，开发了一份问卷，并通过互联网（在线版本）或打印版本提供给初诊或复发性卵巢癌患者。
从 2009 年 12 月至 2012 年 10 月，来自 8 个欧洲国家（奥地利、比利时、法国、德国、意大利、波兰、罗马尼亚和西班牙）的 1830 名卵巢癌患者参与了研究，其中 902 名（49.3%）为初诊患者，731 名（39.9%）为复发性卵巢癌患者。中位年龄为 58 岁（范围 17-89 岁）。几乎所有患者（96.2%）均接受了初始手术和一线化疗。大多数患者对诊断和治疗方案的完整性和可理解性表示满意。患者认为可改善卵巢癌治疗的三个最重要方面包括：“治疗不应导致脱发”（42%）、“应采取更多措施缓解疲劳”（34.5%）和“治疗应更有效”（29.7%）。在 659 名（36%）被提供参与临床试验机会的患者中，有 476 名（26%）参与了临床试验。
本研究强调了卵巢癌患者对所有治疗选择细节的高度需求，无论其文化背景、疾病阶段和患者年龄如何。记录了对潜在副作用和治疗选择的更多信息需求。除了需要更有效的治疗方法外，脱发和疲劳是患者最关心的重要副作用。
