Work Package 4

Patient-facing tools for decision-making

Led from the University of Southampton, work package 4 will identify the needs of patients and their families when making decisions around their cancer risk and work with patients and clinicians to evaluate existing decision aids, building on this research to develop a new template for patient-facing decision aids for cancer genetics to fill the current unmet needs.

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Scope of the Decision Aid

The decision aid being developed as part of the CanGene-CanVar programme will be a template decision aid, with generic features, that can be adapted for different cancer predisposition genes.

The decision aid will focus on decision-making after genetic testing, ie for people who have been identified to have a pathogenic variant in a cancer susceptibility gene.

Working closely with the clinical guidelines work package (3), the team have identified two cancer predisposition genes (lynch syndrome and DICER1) to develop exemplar decision aids from the template.

Decision Aid Development

The decision aid development process will include four main steps:

Step 1

Systematic review and patient workshops reviewing existing decision aids.

Step 2

Patient outreach activities to identify information needs of patients and their families when making decisions relating to their cancer predisposition.

Step 3

Design and development of the patient decision aid.

Step 4

Embedding the decision aid into routine clinical practice

Patient Involvement

Patient and family involvement in work package 3 is a crucial part of the design, development and implementation of the decision aid.

The team are working closely with our Patient Reference Panel, seeking continued input and guidance. They are also offering one-off involvement opportunities to a wider cohort of people with Lynch Syndrome, aiming to see involvement from groups who are often under represented in research.

More information about the current PPI/E activities can be found here.