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Dame Lesley Fallowfield, DBE, BSc, DPhil, MedSci
Professor of Psycho-oncology
Director of the Sussex Health Outcomes Research & Education in Cancer (SHORE-C)
Brighton and Sussex Medical School, University of Sussex
Brighton, United Kingdom
- Seeking to improve doctor-patient communication to reduce patient anxiety relating to genetic testing.
- An education tool is developed to improve physician communications with patients around test results and treatment options.
- This study focuses on an important component of patient care prior to and after genetic testing. If the tool is successful, it could be shared with medical institutions anywhere in the world.
In cases of an unusual breast cancer diagnosis, such as diagnosis at a young age, genetic testing for inherited mutations in breast cancer risk genes, BRCA1 and BRCA2, for instance is commonly prescribed. Many oncologists lack the necessary training for the difficult patient conversations following genetic testing. Dr. Fallowfield is leading a multi-disciplinary effort to create a training program for oncologists and genetic counselors to improve the communication skills of the healthcare team and the experience of women who face a breast cancer diagnosis and the news of a genetic susceptibility.
Full Research Summary
Genetic testing of women at high familial risk of breast cancer is not new but it is being increasingly prescribed to all patients with cancer to help refine their treatment. Learning of a high-risk genetic susceptibility to cancer when a patient might also be coping with her own diagnosis and treatment requires a level of sensitivity at the point of care.
Women worry not only about implications for their own future risks and treatment options but also about the risks and options for their families. Few oncologists are experienced in genetic testing and many genetic counsellors are not experienced in cancer care. Yet, both may be faced with discussing genetic testing and the consequences of a high-risk diagnosis such as testing positive for an abnormal BRCA1 gene, helping patients to understand complex information, and facilitate sharing of this with relevant family members. All these conversations can be challenging.
In the next year, Dr. Fallowfield will capitalize on her experience and reputation for designing evidence-based communication skills training and design materials for a facilitator-led program entitled TRUSTING - Talking about Risk, Uncertainties of Testing IN Genetics. The program will be developed with experienced geneticists, oncologists, surgeons, psychologists, ethicists and importantly, patients.
This training is urgently needed to guide the healthcare team in appropriately discussing the outcomes of genetic testing to ensure that patients are supported during the pre- and post-testing phases.
Dame Lesley Fallowfield is Professor of Psycho-oncology at Brighton & Sussex Medical School, University of Sussex where she is Director of the Sussex Health Outcomes Research & Education in Cancer (SHORE-C) group. Dame Lesley originally trained as a nurse at Guy’s Hospital, London but then did a BSc in Experimental Psychology at Sussex. Research for her doctorate examining the perceptual correlates of optic nerve damage in demyelinating diseases was completed at the Universities of Sussex and Cambridge. The death of a close friend from cancer in 1984 led to a career change; she joined a breast cancer surgeon, Professor Michael Baum in the King’s College Hospital, London, Clinical Trials Unit measuring the psychosocial sequelae of breast cancer. In 1991 she became the full-time Director of a Psychosocial Oncology Group and was awarded the first European Chair in Psycho-oncology from University College, London in 1997. Dame Lesley’s research interests are eclectic and include the measurement of quality of life in clinical trials of cancer therapy, the evaluation of interventions aimed at ameliorating the side-effects of treatments the training of communication skills for health care professionals in cancer and information materials for patients contemplating trial enrolment. She has developed many validated patient reported outcome measures that are used in many international breast cancer clinical trials, published over 400 papers, many book chapters and 3 text books. She lectures and runs training workshops throughout the world in psychosocial oncology, quality of life assessment and communication skills. In 2008 she was made a Fellow of the UK Academy of Medical Sciences. In 2016 she was made a Dame Commander of the Order of the British Empire by Queen Elizabeth II for services to psycho-oncology.
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