Carmen Esteban

Addressing unmet needs in long-term survivors of ovarian cancer (ENGOT ov40/NOGGO S13/GEICO 71-R/Expression VI): insights from a Spanish cohort

Ovarian cancer remains a significant global health concern. Contemporary therapeutics have led to an increased number of long-term survivors. This research investigates the unmet needs of long-term ovarian cancer survivors in Spain, focusing on persistent side effects, patient concerns, lifestyle changes, and ongoing challenges. This is a multi-center, cross-sectional, observational study, assessing the results from the international North-Eastern German Society of Gynecological Oncology survey, Expression VI - Long-term survival with ovarian cancer in Spain. Participants were identified during follow-up visits at oncology departments. A structured questionnaire of 68 items, including demographic, clinical, psychosocial, and lifestyle domains, was completed anonymously in printed format, with implied consent through survey completion. A total of 250 long-term ovarian cancer survivors from Spain, defined as patients diagnosed of malignant ovarian cancer with a survival ≥8 years since diagnosis (median age at diagnosis 52 years; median survival time 11 years), completed the survey. A substantial number of participants continued to experience long-term side effects, including gastrointestinal (90%), dermatologic (91.6%), and neurologic symptoms, such as memory problems (15.1%) and concentration difficulties (10.8%). Nearly half of the survivors (47.3%) expressed concerns about nervousness, 43.6% reported ongoing pain, and 40% struggled with sleep disturbances. Lifestyle changes after cancer diagnostic were significant, with 56.5% of smoker participants quitting or reducing smoking and 41.6% adopting healthier diets. Finally, our results indicate that most participants received some form of follow-up, primarily through blood biomarker monitoring (87.0%) and imaging tests (73.0%). This study highlights the persistent challenges among long-term ovarian cancer survivors in Spain, stressing the need for more comprehensive, tailored aftercare. These findings may be generalized to other regions, emphasizing the importance of addressing ongoing side effects and unmet care needs to improve survivors' long-term quality of life. Enhanced follow-up care, patient support, and effective communication are essential components of this effort.

Prospective Real-World Gynaecological Cancer Clinical Registry with Associated Biospecimens: A Collaborative Model to Promote Translational Research between GEICO and the Spanish Biobank Network.

Patient registries linked to biorepositories constitute a valuable asset for clinical and translational research in oncology. The Spanish Group of Ovarian Cancer Research (GEICO), in collaboration with the Spanish Biobank Network (RNBB), has developed a multicentre, multistakeholder, prospective virtual clinical registry (VCR) associated with biobanks for the collection of real-world data and biological samples of gynaecological cancer patients. This collaborative project aims to promote research by providing broad access to high-quality clinical data and biospecimens for future research according to the needs of investigators and to increase diagnostic and therapeutic opportunities for gynaecological cancer patients in Spain. The VCR will include the participation of more than 60 Spanish hospitals entering relevant clinical information in harmonised electronic case report forms (eCRFs) in four different cohorts: ovarian, endometrial, cervical, and rare gynaecological cancers (gestational trophoblastic disease). Initial data for the cases included till December 2021 are presented. The model described herein establishes a real-world win-win collaboration between multicentre structures, promoted and supported by GEICO, that will contribute to the success of translational research in gynaecological cancer.