The aim of this survey was to increase the knowledge on the characteristics and health concerns of long-term survivors (LTS; survival > 5 years) after ovarian cancer in order to tailor follow-up care. This international survey was initiated by the NOGGO and was made available to members of ENGOT and GCIG. The survey is anonymous and consists of 68 questions regarding sociodemographic, medical (cancer) history, health concerns including distress, long-term side effects, and lifestyle. For this analysis, 1044 LTS from 14 countries were recruited. In total, 58% were diagnosed with FIGO stage III/IV ovarian cancer and 43.4% developed recurrent disease, while 26.0% were receiving cancer treatment at the time of filling in the survey. LTS who survived 5–10 years self-estimated their health status as being significantly worse than LTS who survived more than 10 years (p= 0.034), whereas distress also remained high 10 years after cancer diagnosis. Almost half of the cohort (46.1%) reported still having symptoms, which were mainly lymphedema (37.7%), fatigue (23.9%), pain (21.6%), polyneuropathy (16.9%), gastrointestinal problems (16.6%), and memory problems (15.5%). Almost all patients (94.2%) regularly received follow-up care. Specialized survivorship care with a focus on long-term side effects, lifestyle, and prevention should be offered beyond the typical five years of follow-up care.
本次调查旨在增进对卵巢癌长期生存者（生存期超过5年）特征及健康问题的了解，以优化随访护理方案。该国际性调查由NOGGO发起，面向ENGOT和GCIG成员开放。调查采用匿名形式，共包含68个涉及社会人口学特征、医疗（癌症）史、健康问题（含心理困扰）、长期副作用及生活方式的问题。本次分析共纳入来自14个国家的1044名长期生存者。总体而言，58%的患者确诊时为FIGO III/IV期卵巢癌，43.4%出现疾病复发，26.0%在填写问卷时仍在接受癌症治疗。生存5-10年的长期生存者对自身健康状况的评估显著差于生存超过10年者（p=0.034），而心理困扰在确诊十年后仍维持在较高水平。近半数受访者（46.1%）报告仍存在症状，主要为淋巴水肿（37.7%）、疲劳（23.9%）、疼痛（21.6%）、多发性神经病变（16.9%）、胃肠道问题（16.6%）和记忆障碍（15.5%）。绝大多数患者（94.2%）定期接受随访护理。建议在常规五年随访期后，提供专注于长期副作用管理、生活方式干预及疾病预防的专业化生存护理服务。
肿瘤(癌症)患者之家