Brighton and Sussex Medical School, University of Sussex Brighton, United Kingdom
Professor of Psycho-oncology Director of the Sussex Health Outcomes Research & Education in Cancer (SHORE-C)
Improving communication between healthcare professionals and their patients.
Genetic testing is increasingly prescribed to people diagnosed with breast cancer, not only those with high familial risk. 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 is exploring ways to enable clinicians and genetic counselors to discuss challenging topics such as genetic risk and testing in ways patients can more easily understand. These efforts will enable patients with breast cancer to make informed choices about the treatment options available to them.
Working with a multidisciplinary team, Dr. Fallowfield has designed, implemented, and evaluated the TRUSTING educational training program for healthcare professionals—this serves as a guide for discussing BRCA mutations with patients and families. They have demonstrated the efficacy of TRUSTING and are conducting workshops to facilitate its worldwide implementation. The team has also re-configured some of the materials as modules for potential on-line application. In related work, results from the IMPARTER study that utilized short information films to improve literacy around genetic expression profiling (GEP) testing. demonstrated that the GEP films were not only more effective than leaflets in conveying the information to patients, but volunteers also preferred the films to the leaflets citing clarity of the language used, engaging clips of doctors with patients, clear explanatory graphics, and the reassuring pace and tone of the commentator. The team has expanded their findings to a larger cohort of breast cancer patients. To date, 163 out of the target of 250 participants have been recruited across 16 different breast cancer centers. The films have been translated into Italian, Spanish, French, Urdu, Bengali, Hindi, and Punjabi to increase the study’s global reach.
Dr. Fallowfield and her team are currently training facilitators in the TRUSTING educational program so that its use can be expanded in the coming year. They are continuing to recruit patients into the IMPARTER study. Dr. Fallowfield and her multi-national collaborators are adapting the GEP films for underserved populations. In other studies, her team is determining ways to address the informational gaps, unmet care, and support needs of women with metastatic breast cancer. She hopes the results of her studies will ease the anxiety experienced by women with high-risk genetic susceptibility to breast cancer and empower them to make informed decisions about their treatment options.
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 textbooks. 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.
2016
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