Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2026

Co-design of sarcoma specific digital consumer resources for people diagnosed with sarcoma and their carers: SUN-SHINE (145965)

Georgia KB Halkett 1 , Jenny Davies 1 , Sam Antonio 1 , Chloe Maxwell-Smith 2 , Tania Rice-Brading 3 , Mariana S. Sousa 4 , Janene Sproul 5 , Annabel M Sproul 6 , Helen De Jong 7 , Haryana M Dhillon 8 , Joanna Fardell 9 , Moira O'Connor 2 , Mandy Basson 10
  1. Curtin School of Nursing/Curtin Medical Research Institute, Curtin University, Perth, Western Australia, Australia
  2. Curtin School of Population Health, Curtin University, Perth, WA, Australia
  3. Cooper Rice-Brading Foundation, Sydney, NSW, Australia
  4. Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, NSW, Australia
  5. School of Education, Murdoch University, Perth, WA, Australia
  6. School of Psychology, Murdoch University, Perth, Western Australia, Australia
  7. Occupational Therapy, South Metropolitan Health Service, Fiona Stanley Fremantle Hospital Group, Perth, WA, Australia
  8. Psycho-Oncology Cooperative Research Group, School of Psychology, Faculty of Science, University of Sydney, Sydney, NSW, Australia
  9. School of Clinical Medicine, Faculty of Medicine and Health, UNSW , Sydney, NSW, Australia
  10. Sock it to Sarcoma!, Perth, WA, Australia

Sarcoma is a rare cancer, primarily affecting the soft tissue and bone. It can occur in any part of the body and at any age, though more commonly in people under 25 or over 50.  There are limited Australian-focused information resources for people with sarcoma and carers. We aimed to co-design a knowledge hub for people with sarcoma and their carers.

Methods: Initial feedback on information people with sarcoma and carers wanted was gathered using focus groups and semi-structured interviews. Our team of consumers, healthcare professionals and researchers used feedback to develop the initial content and design of the online resource hub. Written and verbal feedback on content (accuracy and detail) was gained from 17 healthcare professionals. People with sarcoma and their carers were then shown the draft website during semi-structured interviews to obtain feedback on the design and content.  The resources were evaluated independently by two researchers using the PEMAT (Patient Education Materials Assessment Tool). Content analysis was used to analyse participant feedback. The resource hub was refined iteratively in response to feedback.

Results: 11 people with sarcoma and 10 carers provided feedback on the online resource hub. The design and content of the online resource hub was viewed positively by all participants. Themes focused on: making sarcoma information welcoming, accessible and easy to navigate; accessing sarcoma specific information; information on managing treatment and side effects, psychological aspects of treatment and survivorship, practical information and emphasising the importance of exercise and nutrition. Participants provided suggestions to improve clarity, inclusiveness, and accessibility and suggested including lived experience quotes. The average PEMAT score for understandability was 88% and 100% for actionability.  

Conclusion: This resource hub focused on sarcoma has potential to empower individuals and assist healthcare professionals to support people living with sarcoma and carers to thrive rather than just survive.