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“Balancing Expectations with Actual Realities”: Conversations with Clinicians and Scientists in the First Year of a High-Risk Childhood Cancer Precision Medicine Trial

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School of Women’s and Children’s Health, UNSW Medicine, UNSW Sydney, Sydney 2052, Australia
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Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, Randwick 2031, Australia
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Hereditary Cancer Centre, Department of Medical Oncology, Prince of Wales Hospital, Randwick 2031, Australia
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Prince of Wales Clinical School, UNSW Sydney, Sydney 2052, Australia
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Kids Cancer Centre, Sydney Children’s Hospital, Randwick 2031, Australia
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Children’s Cancer Institute, UNSW Sydney, Kensington 2750, Australia
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Division of Haematology/Oncology, Hospital for Sick Children, Department of Paediatrics, University of Toronto, Toronto, ON M5G 1X8, Canada
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Children’s Cancer Centre, Royal Children’s Hospital, Melbourne 3052, Australia
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Division of Cancer, Murdoch Children’s Research Institute, Melbourne 3052, Australia
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Department of Paediatrics, University of Melbourne, Melbourne 3010, Australia
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Department of Paediatrics, Monash University, Melbourne 3800, Australia
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Author to whom correspondence should be addressed.
J. Pers. Med. 2020, 10(1), 9; https://doi.org/10.3390/jpm10010009
Received: 22 January 2020 / Revised: 10 February 2020 / Accepted: 13 February 2020 / Published: 14 February 2020
Precision medicine is changing cancer care and placing new demands on oncology professionals. Precision medicine trials for high-risk childhood cancer exemplify these complexities. We assessed clinicians’ (n = 39) and scientists’ (n = 15) experiences in the first year of the PRecISion Medicine for Children with Cancer (PRISM) trial for children and adolescents with high-risk cancers, through an in-depth semi-structured interview. We thematically analysed participants’ responses regarding their professional challenges, and measured oncologists’ knowledge of genetics and confidence with somatic and germline molecular test results. Both groups described positive early experiences with PRISM but were cognisant of managing parents’ expectations. Key challenges for clinicians included understanding and communicating genomic results, balancing biopsy risks, and drug access. Most oncologists rated ‘good’ knowledge of genetics, but a minority were ‘very confident’ in interpreting (25%), explaining (34.4%) and making treatment recommendations (18.8%) based on somatic genetic test results. Challenges for scientists included greater emotional impact of their work and balancing translational outputs with academic productivity. Continued tracking of these challenges across the course of the trial, while assessing the perspectives of a wider range of stakeholders, is critical to drive the ongoing development of a workforce equipped to manage the demands of paediatric precision medicine. View Full-Text
Keywords: precision medicine; neoplasms; genomics; pediatrics; delivery of healthcare precision medicine; neoplasms; genomics; pediatrics; delivery of healthcare
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McGill, B.C.; Wakefield, C.E.; Hetherington, K.; Munro, L.J.; Warby, M.; Lau, L.; Tyrrell, V.; Ziegler, D.S.; O’Brien, T.A.; Marshall, G.M.; Malkin, D.; Hansford, J.R.; Tucker, K.M.; Vetsch, J. “Balancing Expectations with Actual Realities”: Conversations with Clinicians and Scientists in the First Year of a High-Risk Childhood Cancer Precision Medicine Trial. J. Pers. Med. 2020, 10, 9.

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