Development of a cancer pathway support guide for patients and carers: A co-design project

Abstract

Background
Cancer diagnosis is a complex and multifaceted process that can be stressful and anxiety-provoking for patients. Evidence-based tools and information aids that can be used for guiding and supporting patients during cancer investigations and after diagnosis are limited. This paper presents a user-centred co-design project that aims to develop a cancer pathway support tool for patients, carers and healthcare professionals.
Method
A mixed method co-design approach was used including prototype development (January-March 2022), three online co-design workshops (April-June 2022), one-to-one feedback and beta testing informed by the standardised Theoretical Framework of Acceptability (TFA) questionnaire (July -October 2022). Nine individuals with lived experience of cancer contributed to the project and are referred to as co-designers.
Results
The co-designers valued the potential importance of a tool that can be used by the patients and carers if they want specific information about cancer investigations, diagnosis and treatment. The ability to select what they need as opposed to long leaflets and generating their own questions for the healthcare providers were highlighted as important aspects of improving patient care. The tool was collectively designed to provide clear definitions of the cancer care pathway, easily accessible links from trusted resources, and includes practical information to minimise the burden that can be experienced from preparation for appointments and tests. Beta testing results with a small sample of potential users including patients, carers and health care providers (n=23) showed high acceptability of the guide (Range= 7-35, Mean=28.52, Standard Deviation =3.88) based on the TFA questionnaire.
Conclusion
A cancer pathway support tool called “Your Cancer Pathway Support Guide (YCPSG)” was developed as a result of an iterative co-design process aiming to improve patient experience and outcomes for people referred on a suspected cancer pathway or who have been diagnosed with cancer. The tool provides information and support in both digital and PDF formats. Further studies are needed to evaluate the potential impact of “Your Cancer Pathway Support Guide” on patient outcomes and experience, and the wider system.