ADOPTED PROJECT: Breast Cancer Choices: Evaluation and implementation of a digital patient-centred decision aid to support genetic testing in mainstream care.
Principal Investigator: Dr Katherine Morton, Senior Research Fellow
Dr Gillian Crawford, Consultant Genetic Counsellor, University Hospital Southampton NHS Foundation Trust, Dr Lucy Side, Consultant and Lead Clinician in Clinical Genetics, University Hospital Southampton NHS Foundation Trust, Dr Jackie Chandler, Evaluation Programme Manager (Qualitative), Wessex Academic Health Science Network, Dr Kate Lippiett, Senior Research Fellow, Wessex Cancer Alliance, Prof Diana Eccles, Dean of Medicine, Professor of Cancer Genetics, Faculty of Medicine, University Hospital Southampton, Prof Claire Foster, Professor of Psychosocial Oncology, University of Southampton, Mrs Lesley Turner, Patient and Public Involvement contributor, Ms Kelly Kohut, Consultant Genetic Counsellor, St George’s University Hospitals NHS Foundation Trust
Start date: 1 May 2022
End date: 1 May 2024
The demand for genetic testing for inherited cancer susceptibility is rising and services are increasingly being provided in mainstream care. In Wessex last year, more than 180 genetic tests were offered to cancer patients in mainstream care, and this will increase in 2022 as more genetic services become mainstreamed and eligibility criteria are expanded.
This means that genetic testing is offered by clinicians such as oncologists, surgeons and cancer nurse specialists rather than Clinical Genetic services. It is part of a move to routinely offer genetic testing to all cancer patients where there may be clinical benefit. The results of genetic testing can improve health outcomes by informing optimal treatment pathways and facilitating cancer prevention or early detection in family members.
However, deciding whether to have genetic testing is a complex, personal decision with potentially life-changing implications for the patient and family. Many people with cancer are faced with this decision shortly after diagnosis, at an already stressful time. Without the support of specialist genetic counsellors to discuss the medical, psychological and social consequences of genetic testing, it is essential that these patients are given accessible and appropriate support as a complement to clinical conversations. Mainstream clinicians feel they lack the necessary skills and time to support patients in this complex decision process.
Web-based decision aids could offer an effective solution, giving patients the flexibility to reflect on and discuss information about genetic testing in their own time, in light of their own personal values. Breast Cancer Choices is one such web-based decision aid which was developed through a two-year research project funded by Breast Cancer Now involving extensive patient input and a review of evidence.
By evaluating the implementation of Breast Cancer Choices in mainstream services, we would not only provide improved support to breast cancer patients currently undergoing this difficult process, but also identify wider-reaching implications regarding how best to support patients with other cancers in the national move towards genetic testing. As 1 in 2 people in the UK are expected to develop cancer in their lifetime, with 5-10% of these cancers estimated to be due to inherited predisposition, a clear implementation strategy for mainstream genetic testing is essential.
Overall, the project aims to evaluate the impact of Breast Cancer Choices on patient’s decision making and clinician experiences in mainstream care, and to understand how web-based decision aids can be effectively implemented across mainstream cancer care.