Background: Mesothelioma is a rare asbestos-related cancer with a high disease burden, often with poor outcome. The Victorian Mesothelioma Outcomes Registry was established in 2022, as a sub-study of the VLCR, to collect clinical information, report on standards of care and advocate for equity of access to life-extending treatments. Key quality indicators were identified through a modified Delphi process and a co-designed survey collecting patient reported outcomes and experiences was developed and introduced.
Methods: People diagnosed with mesothelioma during 2022-2023 were identified through HHIS coding extracts (ICD C45) received by the registry. People were invited to participate via opt-out consent and, from 2023, to then complete a bespoke survey. Clinical data was collected at the participating hospitals and entered into a secure database. Patient surveys were either returned electronically or by mail and entered into the same database.
Results: 182 participants from 19 health services were registered during 2022-2023. 77% were men, median age was 74 with 91% pleural mesothelioma. 65% were presented at MDM, 71% had histologic subtyping, 62% had prior asbestos exposure documented in the medical record and 30% had access to a specialist cancer nurse. Systemic anti-cancer therapy (SACT) with chemotherapy and/or immunotherapy was received by 56%. One year overall survival was 53% for the whole cohort and significantly higher (0.74 [0.62-0.83], p<0.001) for those receiving SACT compared to those who did not (0.21 [0.11-0.33]). To date, the response rate to our patient reported outcome and experience survey is 39%.
Conclusions: This real-world data supports trials showing improved survival for people with mesothelioma who receive SACT and is an opportunity to understand why 44% did not. Access to cancer nurse specialists remains low for this high burden cancer and we hope to learn from people's survey responses how best to increase support for them and their carers.