While childhood cancer is rare, survival is not. To achieve cure, however, toxic treatment and painful procedures are required which result in a high burden of symptoms. Supportive care research to manage these symptoms has not kept pace with advances to treat cancer, with less focus on understanding, preventing and managing symptoms.
Healthcare providers do not always know the right questions to ask, children do not complain and parents think a high symptom burden is unavoidable. With mounting evidence for the use of PROs to improve outcomes in adult cancer, there is an imperative to examine how we can also use these tools to improve outcomes for children. However, there are numerous systemic and communication barriers preventing the integration of PROS in routine cancer care for children.
This presentation will delve into the mounting evidence of the effects of socioeconomic and family dynamics, and treatment environments on symptoms experienced by children. We will describe the barriers to the use of PROs – including the burden parents experience when asked to proxy for young and non-verbal children, and alternatives will be explored. We will question what we mean by ‘validity’ of PROs and discuss what matters most in this context to children, parents, researchers and healthcare providers. We will then present our implementation experiences of integrating PROs at the individual and systems levels at Queensland Children's Hospital, and share the strategies we have developed to normalise use of PROs in routine care.