Oral Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

Integrating Patient Voices: A National Survey of Patient Reported Outcome Measure Use in Paediatric Oncology Care and Research (126676)

Joanna Fardell 1 , Clarissa Schilstra 2 , Natalie Bradford 3 , Michala Short 4 , Richard Mitchell 5 , Geoff Delaney 1 , Bogda Koczwara 1 , Ashika Maharaj 6 , Natasha Roberts 7 , Marion Mateos 2 , Antoinette Anazodo 5
  1. University of New South Wales, Randwick, NSW, Australia
  2. Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW Medicine, University of New South Wales, Randwick, NSW, Australia
  3. Queensland University of Technology, Brisbane
  4. University of South Australia, Adelaide
  5. Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia
  6. Monash University, Melbourne
  7. University of Queensland, Brisbane

Objectives:
Patient-reported outcome measures (PROMs) are widely used in research and, when applied at the point of care, can help identify treatment impacts early, enabling timely interventions. This study explored how PROMs are currently used in paediatric oncology across Australia.

Sample and Setting:
Participants were healthcare professionals (HCPs) from various disciplines working in paediatric oncology settings throughout Australia.

Procedures:
An online survey was distributed using purposive and snowball sampling through national paediatric practice networks to gather information on PROM use and practices.

Results:
A total of 45 HCPs from all eight Australian paediatric oncology centres responded (57.8% from NSW). Of these, 38 (83%) reported using PROMs. Usage was nearly evenly split between research (55.3%) and clinical care (52.6%). PROMs were most commonly used by Allied Health professionals (36.8%), followed by Medical (23.7%) and Nursing staff (21.1%). All PROMs were in English and delivered electronically (26%), on paper (47%), or both (11%). Only 26.3% reported integration of PROMs into medical records. Among PROM users, 18.4% felt unconfident in interpreting and responding to results. For non-users, key barriers included lack of suitable PROMs (85.7%) and insufficient training (42.9%). PROMs were primarily used for symptom screening, identifying unmet needs, and enhancing patient satisfaction.

Conclusion and Clinical Implications:
PROM use in paediatric oncology is prevalent in both clinical and research contexts. While their value is well recognized, broader implementation is hindered by issues of accessibility—such as limited integration with medical records and lack of appropriate tools—and capacity, including training needs.