Patterns of care and development of quality indicators in patients with non-epithelial and rare ovarian tumors in Australia: insights from the National Gynae-Oncology Registry

Objective: The Rare Ovarian Tumor Module forms part of the National Gynae-Oncology Registry (NGOR) which measures compliance with the optimal care pathways for gynecologic cancer in Australia. Our objectives were to evaluate patterns of care in patients with non-epithelial ovarian tumors and to develop appropriate clinical quality indicators. Methods: A multidisciplinary reference group developed a module dataset in the NGOR REDCap database to collect clinical data using an opt-out recruitment model across participating Australian hospitals. Clinical quality indicators were developed and refined using consensus methods, with annual reports provided to participating sites to benchmark performance and drive improvement in patient care. Results: As of November 2023, 232 patients from 18 Australian hospitals were enrolled. All cases had histologic confirmation with the majority being adult granulosa cell tumors (47.8%). Almost all patients (97.8%) were presented at a multidisciplinary team meeting. Most had early-stage disease (stage, I 70.3%; II 9.9%; III 9.1%; IV 3.4%; not documented 7.3%) and had surgery alone (72.4%). Thirty-four patients underwent multiple surgeries as primary treatment (14.7%), with a median time to a second surgical procedure of 47 days (interquartile range 36-71). Two-thirds of patients (65.4%) had their first surgery performed by a gynecologic oncologist. Rates of intra-operative and 30-day post-operative adverse events (Clavien-Dindo ≥ grade III) were low, 4.3% and 1.9% respectively. Of 52 patients with stage II disease and higher, 37 (71.2%) received systemic therapy. A high rate of adherence to the 4 clinical quality indicators as measures of best practice care was observed. Conclusions: The NGOR Rare Ovarian Tumor Module has successfully collated relevant data to study patterns of care to inform the development of clinical quality indicators and enable research for these rare tumors. This national collaboration has the potential for benchmarking outcomes in Australia with international experience.