Rapid Fire Oral Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2026

Getting to the core of the matter: establishing Australia’s core outcome set for patient-reported measures in cancer (146500)

Imogen Ramsey 1 , Sibilah Breen 2 , Nick Cristofani-Wykes 2 , Hannah Freeman 1 , Bogda Koczwara 3 , Gabrielle Lewis 1 , Carolyn Mazariego 3 , Nina Melksham 4 , Sandra Nolte 5 6 , Huw Rees 2 , Claire Snyder 7 , Emily Symons 4 , Emma Tod 2 , Sarah Weller 2
  1. Caring Futures Institute, Flinders University, Adelaide, South Australia, Australia
  2. Movember Institute of Men’s Health, Movember, Melbourne, Victoria, Australia
  3. Australian Research Centre for Cancer Survivorship, Health Translation Hub, Faculty of Medicine and Health, UNSW Sydney, Sydney, New South Wales, Australia
  4. Cancer Australia, Sydney, New South Wales, Australia
  5. Person-Centred Research, Monash University, Melbourne, Victoria, Australia
  6. Eastern Health, Melbourne, Victoria, Australia
  7. Departments of Medicine, Oncology, and Health Policy & Management, Johns Hopkins School of Medicine and Bloomberg School of Public Health, Baltimore, Maryland, United States of America

Aims

Standardised collection of patient-reported outcomes (PRO) and experiences (PRE) can support person-centred cancer care, quality improvement, and national benchmarking. This study aimed to develop a national core outcome set (COS) of PRO and PRE domains for routine assessment across all cancer types in Australia, and to identify relevant patient-reported outcome and experience measures (PROMs/PREMs) to support implementation.

Methods

In Phase 1, a targeted literature review of commonly used PROMs, PREMs, and existing frameworks identified candidate PRO and PRE domains. In Phase 2, a three-round modified Delphi study established consensus on core domains (≥75% agreement) through two surveys and a consensus meeting. Participants were consumers, healthcare providers, and research/policy experts (recruitment target: 50 participants/group). Phase 3 mapped commonly used PROMs/PREMs to the agreed COS and appraised PROM psychometric properties.

Results

Thirty-seven domains (28 PRO, 9 PRE) were shortlisted for Delphi voting. Round 1 was completed by 195 participants and 153 completed Round 2 (78% retention). Consensus (Round 3) was achieved for eight PRO domains (cancer-related fatigue; pain; nausea; psychological distress; physical function; cognitive function; financial impact; and overall health-related quality of life) and six PRE domains (fast access to reliable healthcare; clear information, communication, and support for self-care; continuity of care and smooth transitions; involvement in decisions and respect for preferences; emotional support, empathy, and respect; and effective treatment by trusted professionals). An open-text field was also endorsed to capture additional outcomes or experiences not covered by COS domains. Preliminary mapping demonstrated full coverage of the COS by one PROM and one PREM and partial coverage by several others, while identifying opportunities to address gaps through add-on modules and customised item lists.

Conclusions

The COS provides a foundation to support integration of patient-reported data into routine cancer care, quality improvement, and national benchmarking while allowing flexibility in measure selection.