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Thursday, March 28, 2024

Australian-first pancreatic cancer carer study launched

An Australian-first service and study aiming to better support pancreatic cancer carers through the devastating impact of the disease has been announced.

Pancreatic cancer is one of Australia’s deadliest diseases, with the average time from diagnosis to death a devastatingly short five months.

In an Australian first, a new service and study aims to support carers through the impacts of pancreatic cancer.

“To support carers through a loved one’s journey with pancreatic cancer, PanKind is partnering with QIMR Berghofer Medical Research Institute to trial a new service that aims to support carers through the devastating impact of the disease,” the Australian Pancreatic Cancer Foundation, PanKind said in a statement.

The PRoCESS (Pancreatic cancer Relatives Counselling and Education Support Service) Trial, led by Associate Professor Vanessa Beesley and Professor Rachel Neale from QIMR Berghofer Medical Research Institute, aims to determine whether having a nurse provide structured counselling and education to carers of people with pancreatic cancer helps them cope with the challenges they are facing. It will also look at whether it is cost-effective for the health system.

“Carers of loved ones with pancreatic cancer are twice as likely to experience clinical anxiety than the people they are caring for, no doubt due to unmet support needs that are compounded by the incredibly short timeline from diagnosis to death,” says PanKind CEO, Michelle Stewart.

“In addition to carers being immediately confronted with the need to assist in the management of complex physical symptoms and provide emotional, financial, legal and spiritual support, they also face the impending loss of their loved one. It is a brutal diagnosis and a huge weight to bear.”

Find out more and register for the PRoCESS Trial

“Who cares for the carers?”

Retired engineer, Milton Kirkwood, was married to his beautiful wife, Frances, for 25 happy years. Three years ago, she was diagnosed with stage four pancreatic cancer. Sadly, just five short months later, she lost her battle with Australia’s deadliest cancer.

“I was surprised that no support whatsoever was mentioned to me through the hospital system. No referral to a counsellor, psychologist or support group, nothing. While I knew I could survive the inevitable outcome, because I had been through similar experiences, it would have been so helpful to have some support. I know many people in my situation would have been completely overwhelmed. It begs the question, who cares for the carer?” said Milton.

Over 3,300 Australians die each year from pancreatic cancer, with the average time from diagnosis to death a devastatingly short five months. While all attention and focus rightly go to the patient, there is little scope for any thought about the impact on carers, who have minimal time to adjust.

The project will assess the impact of the counselling intervention on various outcomes, including carers’ belief in their capacity to provide appropriate support, as well as their mental health, fatigue, supportive care needs and quality of life. All participants will be provided with general information support; however, half of the participants will also be offered counselling and education sessions with a nurse via video conferencing or telephone in order to measure its effectiveness. The counselling will be weekly for four weeks and then fortnightly for three months. Monthly sessions are then available until the end of the study if desired.

Register your interest

Participants are currently being recruited for the trial and can be from anywhere in Australia however must be the primary carer of a person diagnosed with pancreatic cancer in the last three months. People can register their interest in the study and find out more information by visiting www.qimrberghofer.edu.au/process-trial/

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