The growing population of cancer survivors are at risk of adverse toxicities and treatment side-effects, medical and psychological comorbidity, financial stress, and impairments in physical, social, emotional, and occupational functioning.

The RBRC’s project was dedicated to improving how these problems are quantified, using patient-reported outcomes (PROs). PROs are important tools for capturing information about a person's health, from their perspective. PRO data are vital to help individuals manage the complex impacts of cancer on quality of life, design appropriate health services and policy, detect differences in the effects of medical and supportive care interventions, and understand the true burden of cancer on population health.

Using a rigorous and co-designed approach, we developed a core outcome set for cancer survivorship. This was achieved through focus groups with 40 cancer survivors from SA and NSW, a review of cancer survivorship PROs, and a multistage Delphi consensus study involving 69 national experts in cancer survivorship research, practice, policy, and lived experience.

The core outcome set represents the panel’s consensus on the minimum outcomes to assess in cancer survivorship research.

Recognising systemic barriers to implementing the core outcome set for population monitoring of cancer survivorship, the RBRC investigated the regulatory and legislative challenges for conducting population-based PRO research in Australia, in the context of proposed legislative reforms for data sharing, and international examples of population-based PRO research.

We are now leading a follow-up study with a team of collaborators from the International Society of Quality-of-Life Research (ISOQOL). The study will determine the most appropriate PRO measures for assessing the core outcome set, by applying published standards for health measurement instruments.