World-first guidelines to improve outcomes for children following cancer

World-first guidelines launched to manage long-term communication problems will help improve the quality of life for children following cancer treatment.

Up to 80 percent of children treated for brain cancer or leukaemia go on to develop communication problems from their cancer and lifesaving treatment however, these problems sometimes don't develop until months or even years after treatment. If left untreated, social and personal relationships, schooling and career prospects can be severely impacted, while some problems with swallowing and eating can prove life-threatening.

The new NHMRC endorsed guidelines provide recommendations to ensure that children are provided follow up care for communication and swallowing until adolescence and that health professionals and families are more aware of these issues.

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“The incidence of childhood brain cancer and leukaemia is rising, but thankfully so too are the survival rates due to advances in medical care and treatments,” said Dr Kimberley Docking, Director of the NeuroKids 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 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, who is also a research fellow at Sydney Children's Hospitals Network, 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, collaborating with colleagues and peers across a number of organisations including University of Sydney and cancer centres at both The Children's Hospital at Westmead and Sydney Children's Hospital, Randwick.

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 Cancer Centre for Children at The Chlidren's Hospital at 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:

  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 said research shows that with the right speech pathology support the majority of kids go on to regain function and improve their skills.

“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.”

The development of the guideline was led by a steering committee chaired by Dr Docking in partnership with academics and clinicians from the University of Sydney, Murdoch Children’s Research Institute, University of Melbourne, Cancer Centre for Children and Kids Rehab unit at The Children’s Hospital at Westmead, Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, University of New South Wales, and Vrije Universiteit Brussel (VUB) and Université Libre de Bruxelles (ULB) in Belgium.

Declaration: The Cancer Institute NSW funded the original grant that lead to the development of the guideline.