Speak Out April 2021

1. Communication assessment and intervention should be offered to children diagnosed with childhood brain tumour or leukaemia. 2. Swallowing assessment and management should be offered to children diagnosed with childhood brain tumour or leukaemia. Dr Docking, who is also a research fellow with the Sydney Children’s Hospitals Network, said research shows that with the right speech pathology support the majority of kids go on to improve their skills and regain function. “My goal is to ensure that all families know to ask the right questions, to have their children’s needs assessed early and monitored long-term. Speech pathologists will meet them across all sectors; health, education, and private practice.” Development of the guideline was funded by the Cancer Institute NSW, and led by a steering committee chaired by Dr Docking in partnership with Dr Dalla-Pozza, Dr Rosemary Hodges (Project Coordinator), Dr Lani Campbell (Research and Evidence Consultant), Sara Chami, Emma Campbell, and Stefani Knijnik from The University of Sydney; Professor Angela Morgan, Murdoch Children’s Research Institute & University of Melbourne; Dr Mary- Clare Waugh, Head, Kids Rehab at The Children’s Hospital at Westmead; Professor Claire Wakefield, Director, Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, University of New South Wales; and Neurolinguistics Professor, Philippe Paquier, Vrije Universiteit Brussel (VUB) and Université Libre de Bruxelles (ULB), Belgium; and Ms Maria Messina, consumer. The Guideline Development Committee included a national health professional and consumer group who provided input into the guideline.”

Research Laboratory in The University of Sydney’s Faculty of Medicine and Health and Chair of the Guideline Development Committee. “So, we have this ‘wonderful problem’ of being able to help support more and more children who now have their whole lives ahead of them but who also have a high chance of experiencing communication and swallowing disorders as a result of their cancer and their very necessary cancer treatment.” Dr Docking’s twenty years of research in this field has driven the development of the Clinical Practice Guideline for the Management of Communication and Swallowing in Children Diagnosed with Childhood Brain Cancer or Leukaemia. Clinical practice guidelines are statements that draw on the latest research to make recommendations to optimise patient care and assist health care practitioners to make informed decisions about appropriate care. Dr Luciano Dalla-Pozza, Director of the Cancer Centre for Children, Westmead, said the new guideline was proactive in looking at the needs of future patients by learning from the past. “We’ve seen the cancer cure rate rise but this has come at a cost. The cost that patients pay is the complications or side effects from the tumour, from therapy and from surgery that they carry into adulthood. We’ve seen that we can do better and help these children reach their full potential and have good social interactions with their peers, good relationships and good mental health.” “This is extraordinarily important on a personal level so they can be who they want to be.” Key recommendations The new guideline aims to ensure children are monitored up until adolescence and receive the treatment they need. They are translated into six languages and hinge on two key recommendations and a range of practice points covering assessment and intervention, the multidisciplinary team, and education: “My goal is to ensure that all families know to ask the right questions, to have their children’s needs assessed early and monitored long-term."

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April 2021 | Speak Out