UNSW researcher Dr. Ursula Sansom-Daly will lead a global team to develop a training program for health-care professionals on how to have end-of-life conversations with young cancer patients.

The project is being funded by the Adolescent and Young Adult (AYA) Cancer Global Accord, an international partnership between CanTeen Australia, Teen Cancer America, and the UK’s Teenage Cancer Trust. Their aim is to improve outcomes for adolescents and young adults with cancer and their families worldwide.

"It’s a tragic reality that around 400,000 young people aged 15-39 will die of cancer worldwide every year," said Dr. Sansom-Daly, a postdoctoral research fellow leading the Behavioural Sciences Unit’s Mental Health Research Team at UNSW Sydney, and clinical psychologist at Sydney Youth Cancer Service.

"In Australia, sadly this means about one adolescent/young adult cancer patient dies every 3-4 days."

"If young people with a potentially incurable diagnosis aren’t given the opportunity to have end-of-life conversations, they’re more likely to experience greater anxiety and physical pain and undergo intrusive procedures in their final days, and may also be less likely to die where they would want to."

"Because of how confronting it is, young people and their families can really rely on health professionals to ‘lead the way’ in talking about end-of-life issues and preferences. If these conversations don’t happen, this can be really isolating for the young person, and can make it even harder for surviving relatives to deal with their grief."

"That’s why training health-care professionals to guide and facilitate age-appropriate end-of-life conversations for adolescents and young adults with cancer is absolutely critical," Dr. Sansom-Daly said.

"What we don’t yet know is what this kind of training should include, in order to best equip health-care professionals to navigate these difficult discussions with young people."

The $60,000 grant from the AYA Cancer Global Accord will be used to develop a training blueprint, which will then be evaluated with health-care professionals and young people.

"The Global Accord partners are committed to international collaboration on innovative research into the psychological effects of cancer on adolescents and young adults," said CanTeen CEO Peter Orchard.

"Despite being critically important, there has been little research into how best to facilitate end-of-life conversations, which is why all three partner organizations are thrilled to be supporting this vital project," he added.

The grant announcement comes ahead of the 3rd Global Adolescent and Young Adult Cancer Congress being held in Sydney from December 4-6, 2018. For more information and to register, visit www.ayaglobalcancercongress.com.