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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
Goal: To improve communication between healthcare professionals and breast cancer patients related to genetic testing.
Impact: Working with a multidisciplinary team, Dr. Fallowfield has designed an educational training program to enable clinicians and genetic counselors to discuss challenging topics such as genetic risk and testing in ways patients can more easily understand. Her techniques could ease anxiety in women with high-risk genetic susceptibility to breast cancer and help them make more informed decisions about their treatment options.
What’s next: Dr. Fallowfield plans to produce educational workshops to evaluate the effectiveness of her program. Clinicians who have undergone her training will hold recorded consultations with “patients” (actors) that Dr. Fallowfield and her colleagues will study to assess the clinicians’ communication skills.
As more women at high risk of developing breast cancer undergo genetic testing, concerns have been raised about physicians’ ability to explain complex information about the genetic results to their patients, since many lack the necessary training to do so effectively and sensitively. If proven successful, Dr. Fallowfield’s approach to improving oncologists’ and genetic counselors’ communication skills could be implemented in medical institutions around the world.
Full Research Summary
Research area: Developing tools to improve communication between doctors and patients prior to and after genetic testing.
Impact: Genetic testing has been recommended for women at high familial risk of breast cancer for many years but is now increasingly prescribed to all patients with cancer to help refine their treatment. Unfortunately, few oncologists are experienced in genetic testing, and many genetic counselors are not experienced in cancer care. As a result, they may face challenges when they discuss the consequences of a high-risk diagnosis (such as testing positive for an abnormal BRCA1 gene), help patients understand complex information, and facilitate sharing of it with family members. Dr. Fallowfield’s efforts to improve communication would help these providers handle these difficult conversations more effectively and with greater sensitivity, easing patients’ anxiety and helping them make truly informed decisions about treatment options.
Current investigation: Dr. Fallowfield has designed materials for a facilitator-led program called TRUSTING (Talking about Risk, UncertaintieS of Testing IN Genetics). She worked with geneticists, oncologists, surgeons, psychologists, ethicists, and patients to ensure that the information she included was of high quality, evidence-based, and could be understood by patients of varied socio-educational backgrounds.
What’s next: The program will be evaluated during a two-day period with clinicians and actors posing as patients. During workshops, the clinicians will consider how they describe BRCA tests and the results, explain risk, check patients’ understanding of this information and what it means for their future treatment recommendations. Dr. Fallowfield will record clinicians’ consultations with “patients” (actors) before and after the workshop. Their communication skills will be assessed subjectively (clinician self-assessment) and objectively by the “patients” and two independent researchers, who will be unaware if they’re listening to a pre- or post-workshop discussion.
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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