Five years of centralized pediatric oncology care in the Netherlands: Evaluation of diagnosis and treatment of children and adolescents with a malignant extracranial germ cell tumor

Abstract

Background: Since 2018, cancer care for patients up to 18 years is concentrated in the Princess Máxima Center for Pediatric Oncology (Máxima). In this retrospective population-based study, we evaluated the diagnosis and treatment of malignant extracranial germ cell tumors (GCTs) presenting at our institution and elsewhere in the Netherlands between 2018 and 2022. Methods: The files of patients with malignant extracranial GCTs diagnosed in patients aged 0–18 years, between 2018 and 2022, were retrieved from Netherlands Cancer Registry (NCR). Patient, tumor and treatment characteristics were compared in and outside the Máxima. Results: A total of 122 cases were identified, comprising 89 gonadal (51 testicular, 38 ovarian) and 33 extragonadal GCTs. More than half of the patients (70/122, 57 %) were treated in the Máxima. Testicular GCTs were predominantly treated outside the Máxima (37/51, 73 %). Ovarian and extragonadal GCTs were mainly seen in the Máxima (31/38, 82 % and 25/33, 76 %, respectively). Patients treated outside the Máxima were older (median age 17 years outside versus 8.5 years in the Máxima), were of male gender more often (40 versus 23 boys), and received adjuvant chemotherapy less often (15 versus 35 patients). In the study period, only four patients died from their GCT (three in the Máxima, one not). Conclusions: Since centralization, more than half of pediatric malignant extracranial GCT patients in the Netherlands have been treated in the Máxima, particularly prepubertal children, those with ovarian tumors, higher-stage disease, and complex extragonadal cases. Through a shared care center structure that fosters collaborative multidisciplinary meetings and the recent establishment of specialized care pathways, a high standard of care for pediatric malignant extracranial GCT patients in the Netherlands is ensured.