A patient registry has been launched in Aotearoa New Zealand to improve access to an underutilised therapy proven to make the lives of pancreatic cancer patients much more bearable.
The treatment – called pancreatic enzyme replacement therapy (PERT) – is known to improve digestion, slow down the rate of weight loss, improve quality of life and allow people with pancreatic cancer to better tolerate chemotherapy.
Dr Amanda Landers
The registry is being hosted by ASPERT, the Aotearoa Australia Pancreatic Enzyme Replacement Therapy research group, led by Dr Amanda Landers, a palliative care physician and Head of the Department of Medicine at the University of Otago, Christchurch.
"Our mission is to make sure every New Zealand and Australian patient with pancreatic cancer gets assessed by a dietitian and given access to PERT medication, if possible," Dr Landers says.
"This therapy not only makes the last weeks and months of a patient's life more bearable and less miserable but can potentially extend survival by helping them to better absorb the nutrients in their food, and to tolerate chemotherapy and other treatments."
Dr Landers says too few of the 700 New Zealand patients diagnosed with pancreatic cancer each year are given access to PERT.
''Its use is variable at best, both here and in Australia, even though it's standard treatment in other parts of the world," she says.
"That's due to a lack of awareness from both patients and clinicians."
Results from a recent study published by Dr Landers and colleagues shows 40 per cent of New Zealand European pancreatic cancer patients (and 45 per cent of Māori patients) have never even heard of PERT treatment.
Dr Landers says that's not helped by the fact only a quarter of New Zealand patients diagnosed with pancreatic cancer even get to see a cancer specialist.
"Once diagnosed many patients don't get referred on, due to their poor prognosis," she says.
It's hoped the new patient-reported registry and accompanying survey (online now at pancreasstudy.com) will help fix this, directly educating patients and providing a letter they can take to their clinicians.
The research group, which consists of 20 Australian and New Zealand pancreatic cancer doctors, nurses and palliative care specialists and patients, launched the ASPERT registry on Facebook, Twitter and LinkedIn last month.
"We're off to a good start, with 42 engagements from patients diagnosed with pancreatic cancer already," she says.
"By filling out our online survey at pancreasstudy.com and linking with our social media pages (https://www.facebook.com/aspertresearch) they'll not only improve their own access to and knowledge of the therapy, but also allow us to build up the data around PERT's use."
"We believe every pancreatic cancer patient should rightly have access to enzyme replacement therapy following a dietitian review, to ensure they eat and stay as well as possible in the precious time they have left." – Dr Amanda Landers
Pancreatic cancer has a very poor prognosis, with a five-year survival rate of only 5 per cent. On average, there are only 92 days between diagnosis and death, due to the fact the cancer is diagnosed late, hides itself in the body, with symptoms which are hard to identify and isolate. There is no known cure except for surgery if caught early enough.
"In addition, the symptoms patients face are miserable, reducing their quality of life at a time when they are counting down the weeks and days they have left," Dr Landers says.
"The cancer affects digestion of food and the body's ability to produce enzymes, which causes stomach pain, nausea, vomiting and severe diarrhoea, making access to PERT all the more vital, to help reduce those debilitating side effects."
PERT is a biological enzyme medication – better known as Creon – which is derived from the liver of pigs. Easily administered in pill form, it's also funded in New Zealand for cystic fibrosis.
"We believe every pancreatic cancer patient should rightly have access to enzyme replacement therapy following a dietitian review, to ensure they eat and stay as well as possible in the precious time they have left," Dr Landers says.
