Individual Abstract within a Delegate Designed Symposium 2025 Joint Meeting of the COSA ASM and IPOS Congress

Co-designing an interactive website for people affected by upper gastrointestinal cancers (#253)

Natalie Winter 1 , Tiffany Dobson 2 , Ruby Hart 3 , Sophie Broughton 4 , Keon Stevenson 5 , David Watson 6 , Mark Smithers 7 , Andrew Barbour 7 , Michael Jefford 8 9 , Eric O 10 , Chatpakorn Prasertsung 10 , Trish Livingston 1 , Victoria White 11
  1. Centre for Quality and Patient Safety Research, School of Nursing and Midwifery, Institute for Health Transformation Faculty of Heath, Deakin University, Melbourne, Australia
  2. Pancare Foundation, Melbourne, Australia
  3. Cancer Council Victoria, Melbourne, Victoria
  4. Victorian Department of Health, Melbourne, Victoria
  5. Consumer representative, n/a
  6. Flinders University, Adelaide, South Australia
  7. School of Medicine, The University of Queensland, Brisbane, Queensland
  8. Department of Health Services Research, Sir Peter MacCallum Cancer Centre, Melbourne, Victoria
  9. Sir Peter MacCallum Department of Oncology, University of Melbourne, Melbourne, Victoria
  10. Faculty of Health, Deakin University, Melbourne, Victoria
  11. School of Psychology, Deakin University, Melbourne, Victoria

Background/rationale  Due to their complexity, people living with, or supporting someone with, upper gastrointestinal cancer, may experience extreme levels of burden and distress. Compared to more common cancers, there is minimal information and few readily available resources for people affected by these cancers, leading to ongoing unmet needs and uncertainty during the illness trajectory.  The initial concept and framework of iCare was co-designed in previous studies for general cancer support and colorectal cancer care. Through co-design, this project aimed to adapt an existing website (iCare) for people affected by upper gastrointestinal cancers.

Methods  Leading national consumer organisation representatives (n=6), patient and carer representatives (n=2) and clinicians (n=4) were engaged in a co-design process. An iterative approach was applied to develop the content, design, navigation and features of iCare. Workshops were held with consumer organisation representatives, patients, and carers to determine the content of iCare. This included main topic areas such as information about side effects, as well as determining suitable existing evidence-based web resources to include in iCare. Content was reviewed by clinicians who specialise in gastrointestinal cancers and any additional evidence-based resources were incorporated. Throughout development, consumer organisation representatives, patients, and carers provided feedback on the design and navigation of the website, and interactive features e.g. pain diaries.

Impact on practice iCare has the potential to address inequities in care by providing information and resources to people affected by upper gastrointestinal cancer. A randomised controlled trial is currently underway testing the feasibility and acceptability of iCare and its preliminary effectiveness on quality of life, burden and unmet needs.

Discussion To ensure equitable provision of care for people affected by less common cancers, co-design plays a crucial role in shaping interventions that are well-suited to their needs and address existing gaps in treatment.