QIMR Berghofer researchers are appealing to the main carers of people with pancreatic cancer to participate in an innovative trial to evaluate support services.
The trial will compare the limited existing support for carers with a new telehealth service in which they receive counselling and education from trained nurse-counsellors.
Pancreatic cancer is the third deadliest cancer in Australia, with the average time from diagnosis to death just five months. For carers, it means they have little time to adjust as they suddenly find themselves managing symptoms and treatment for a loved one they face losing.
To support these carers, PanKind, an Australian foundation exclusively dedicated to pancreatic cancer, is partnering with QIMR Berghofer Medical Research Institute to trial the Pancreatic cancer Relatives Counselling and Education Support Service (PRoCESS). This trial will see some participants receive a new nurse-led service which aims to provide practical and emotional support as they navigate their caring responsibilities. Other participants, decided randomly, will receive an information package only.
Led by Associate Professor Vanessa Beesley and Professor Rachel Neale from QIMR Berghofer, the trial investigates whether PRoCESS can help carers cope and whether the new service is cost-effective for the health system.
"Pancreatic cancer is a brutal and debilitating cancer for all involved, and we know it can take a significant toll on carers. They're twice as likely to have clinical anxiety as the person with cancer," said A/Prof Beesley.
Associate Professor Vanessa Beesley.
"Very suddenly carers are confronted with the need to assist in the management of complex physical symptoms, provide emotional support, and help with treatment decisions and end-of-life care planning. There's very little coordinated care for carers and they're often left to figure out everything on their own.
"We need to test if this new service will help carers cope, and reduce hospital admissions and other health system costs to determine if it is viable to continue the service after the trial."
Queensland-based participant Gloria Scarborough took part in the PRoCESS trial and was offered counselling. As a former nurse, she was already confident managing the medical needs of her husband of 50 years, Rick, when he was diagnosed with pancreatic cancer. But she said PRoCESS helped her through her intense grief following his death, just six weeks later.
"Rick was my soulmate and after he died I was emotionally and physically exhausted. I just couldn't believe it had happened. I was in a nightmare that I couldn't wake up from," she said.
"My nurse-counsellor saved my life. I was able to speak openly about my experience, and she really listened and let me tell my story. And it made such a difference - it enabled me to move on from this horrible grief."
Gloria says PRoCESS helped her move past her grief after losing her husband Rick to pancreatic cancer.
While the early anecdotal feedback is encouraging, researchers still need about 100 participants to properly examine the service's effectiveness in helping carers and reducing costs.
PanKind chief executive officer Michelle Stewart said support was so important when a loved one was affected by pancreatic cancer.
"The toll that the disease takes on the entire family is immense. We hope that this trial will help to identify the best way to provide resources for carers and patients, at a time that makes a difference to their ability to cope," Ms Stewart said.
