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NEW research revealing that patients with pancreatic cancer in rural and socially disadvantaged areas receive a lower quality of care has experts calling for more research, education and improved access to multidisciplinary services.
Dr Mehrdad Nikfarjam, surgeon and founder of Pancare Australia, told MJA InSight that “the [finding] that so many people from these areas aren’t been given the standard of care shows that many people are being denied the possibility of a cure”.
He said that this trend was “particularly disturbing” in the cases where patients had an operable tumour.
“What we need is more education on what are the best care practices for pancreatic cancer.”
Dr Nikfarjam was commenting on a study published today in the MJA which assessed the factors associated with quality of care for patients with pancreatic cancer.
The authors reviewed medical records of 1571 patients diagnosed with pancreatic cancer from 2009–2011 and notified to the Queensland and New South Wales cancer registries.
Patients were assigned quality of care scores. As part of this process, clinicians were asked to provide statements on what was important in the care of patients with pancreatic cancer. Clinicians then scored those statements on a scale of zero to ten, and captured elements of care, including referral to a hepatobiliary surgeon, appropriate computed tomography scanning, entry into a clinical trial, and psychosocial support.
The authors examined variations in the scores associated with patient and health service-related factors. Patient characteristics assessed included age, gender and area of residence, and health-service factors included the type of specialist first seen, and the number of cancer presentations for the facility to which the patient first presented.
They found that quality of care scores for patients with pancreatic cancer were lower for patients from rural or socially disadvantaged areas. They were higher for patients who first presented to a hospital with a high pancreatic case volume. A high score was significantly associated with improved survival.
“Systems of care need to be implemented which ensure that equitable treatment is provided for all Australian patients with pancreatic cancer,” they wrote.
Professor Andrew Barbour, surgeon at Greenslopes Private Hospital and senior lecturer at the University of Queensland, told MJA InSight that he was not surprised by the results of the study, “but I am disappointed”.
“The part of the research that compares what is important in pancreatic cancer care with the care that patients actually received is the sad part.”
Professor Barbour said that underpinning best practice for pancreatic cancer care was an assessment of the stage of the tumour, which guided the treatment provided.
“It’s important that all care takes place in the context of a multidisciplinary team (MDT). In this research, only one-third of the patients were treated in a multidisciplinary environment.
“[An MDT] consists of surgeons, oncologists, radiologists, gastroenterologists and pathologists. Allied health is important, too, and the value of a nurse care coordinator cannot be underestimated. This research showed that psychosocial support was important, but it is not commonly acted on.”
Professor Barbour said that multidisciplinary care didn’t always mean patients had to travel, as modern technology now allowed for virtual consultations with MDTs.
However, Dr Nikfarjam said that there were some treatments that could not be done close to home.
“Some patients from rural areas can be reluctant to travel and asking them to leave can have an impact on their work and their family, and that’s a difficult scenario.
“There needs to be more support available for patients and their families to make it easier for them to travel.”
Dr Nikfarjam said that bias had also contributed to the varying degrees of pancreatic cancer care because “there’s a view that it’s a death sentence”.
“But often, you’ll find that it’s the case you think is unlikely to do well, that is the one that does well.”
Professor Barbour said there was no denying the very poor survival rate of pancreatic cancer; however, important developments had been happening.
“We now know that patients who receive good quality palliative care with chemotherapy do better than those who don’t. You can slow the progress of the cancer – so it’s not all hopeless and futile.”
Professor Barbour said that Australia was making a big mark in researching the genomic basis of pancreatic cancer.
“Understanding doesn’t give us all joy, though, because it’s shown that pancreatic cancer is made up of multiple different diseases – some we have defined.
“The challenge is to set up a clinical trial to address [the genetic] problem. We need ways of identifying patients so that they can enter a trial for a treatment targeting that gene,” Professor Barbour said.
“The one-size-fits-all approach is why we haven’t been making progress in pancreatic cancer.”
Dr Nikfarjam said that ultimately, a greater funding commitment was needed for pancreatic cancer, which had been underfunded compared with other types of cancer.
“We need more investment in studies and setting up registries to capture what’s going on. That allows us to figure out if patients are being given the best opportunities for treatment. That’s why not-for-profits, such as Pancare, are putting in big drives to fund pancreatic cancer research projects that haven’t been able to get funding,” Dr Nikfarjam said.
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