Introduction
Pancreatic cancer has the lowest survival rate of all cancers worldwide. Patients experience high levels of physical and emotional symptom burden.
Aim
To develop an Australian co-designed, online supportive care resource with and for people affected by pancreatic cancer to promote wellbeing and self-management.
Method
Qualitative interviews with 22 patients, carers, health professionals and advocacy experts were conducted to understand the experience of living with and caring for people with pancreatic cancer. Themes from these data informed co-design workshops to develop a paper prototype of the resource. Patients selected topics for inclusion and guided the ”look and feel”. The web-app was built and trialled by the same group of patients, carers and experts. Revisions were undertaken and the resource launched in May 2019.
Results
The plethora of negative information online about pancreatic cancer was identified as causing distress. The importance of access to information and support to maximise wellbeing was emphasised and is an important message for professionals. Concern about the imminence of death was reported by professionals and carers, however few patients discussed this. Patients described being proactive, exercise and meditation as effective ways of promoting resilience and wellbeing.
Patients requested that the resource engage with them as an individual, not a person with a medical condition, that language be positive, and content framed in an uplifting, yet realistic, way. The style and breath of the web-app will be showcased to raise awareness of this unique resource. There has been 650 users (with 25% returning) in the first 3 months and feedback has been very positive.
Conclusion
PanSupport delivers the first Australian, co-designed, supportive care web-app for people affected by pancreatic cancer. Its focus on wellbeing, resilience and capacity to live well offering a new lens through which to develop person-centred interventions for people with pancreatic cancer.