Lynch choices: A mixed methods study to optimise a decision aid
Research type
Research Study
Full title
Lynch choices: A mixed methods study to optimise a decision aid being co-developed with people with Lynch syndrome
IRAS ID
312473
Contact name
Kelly Kohut
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
3 years, 0 months, 0 days
Research summary
A systematic literature review has been submitted and is currently undergoing peer review for publication in Familial Cancer. The review identified quantitative, qualitative and mixed-methods studies involving adults with or without cancer who used an intervention to inform decisions about any cancer susceptibility genetic test or screening/risk-reducing options due to a known pathogenic gene variant. Interventions had a positive impact on experience and cognitive, emotional, and behavioural outcomes, without causing harm. The conclusion was that decision-support resources should be used to complement the cancer genetic counselling patient pathway. These should be rigorously developed according to evidence-based frameworks and in collaboration with patients. A gap was identified for carriers of Lynch syndrome to make decisions about cancer risk and a decision was taken to start co-development of a decision aid, together with patients and stakeholders. This study will involve semi-structured interviews with people with Lynch syndrome to understand their personal views and values, followed by think-aloud interviews to ask them what they think about the prototype decision aid. Iterations will be made using the Person-Based Approach. Additional invitations will be delivered in the community to widen diversity of recruitment. For those unable to take part in the interviews, a survey will be made available to complete online.
REC name
HSC REC B
REC reference
22/NI/0101
Date of REC Opinion
20 May 2022
REC opinion
Further Information Favourable Opinion