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Professor 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: 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 by empowering them to make informed decisions about their treatment options.
What’s next: Dr. Fallowfield will design short, information films that will describe the general principles behind gene expression profiling (GEP) testing, providing a visual tool to help patients learn and understand important aspects of commonly used tests.
As more and more women at high risk for developing breast cancer are undergoing genetic testing, it is important for them to have access to genetic screening information. Many physicians and healthcare professionals lack the necessary training to explain complex information about the genetic results to their patients in an effective and sensitive manner. Dr. Fallowfield is addressing this issue to improve oncologists’ and genetic counselors’ communication skills, the results of which will be implemented in medical institutions around the world.
Full Research Summary
Goal: To improve communication about genetic testing between healthcare professionals and breast cancer patients.
Impact: Genetic testing is increasingly prescribed to all breast cancer patients, not only those at high familial risk of breast cancer. Unfortunately, few healthcare professionals are experienced in genetic testing and may face challenges when they discuss the complex test results, the consequences of a high-risk diagnosis (such as testing positive for an abnormal BRCA1 gene), and implications for family members. Dr. Fallowfield has designed an educational training program (TRUSTING) to enable clinicians and genetic counselors to discuss challenging topics surrounding genetic testing in ways patients can more easily understand. Dr. Fallowfield’s techniques are designed to ease anxiety in women with high-risk genetic susceptibility to breast cancer and help them make more informed decisions about their treatment options.
Current investigation: In the coming year, Dr. Fallowfield and her colleagues will design information films that describe gene expression profiling testing in a patient-friendly manner and that can be distributed effectively.
What she’s learned so far: Working with a multidisciplinary team, Dr. Fallowfield has designed, implemented, and evaluated the TRUSTING educational training program with healthcare professionals who discuss BRCA mutations with patients and families. They have demonstrated its efficacy and are enabling facilitators worldwide to implement TRUSTING in workshops for surgeons, oncologists, genetics counsellors and geneticists. The team is also re-configuring some of the materials as modules for potential on-line application.
What’s next: In the coming year, Dr. Fallowfield and her colleagues will address the problem of health literacy skills that exist in the general population worldwide and which directly limit patient understanding during consultations. They will design short, patient-friendly information films that will describe the general principles behind gene expression profiling (GEP) testing so that patients can view important aspects of commonly used tests. Included in the film will be doctors explaining test results and easy to interpret graphics for patients to observe. Dr. Fallowfield will compare the delivery of this information by film versus information leaflets to determine the best mode of delivery.
Professor 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 450 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. She is a Fellow of the UK Royal Academy of Medical Sciences and Honorary Fellow of the Association Of Cancer Physicians. 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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