For some people with chronic pancreatitis, surgery is the only hope. The condition can cause debilitating abdominal pain, and, sometimes, push people to turn to substances for relief. But the long-term results of pancreatic surgery, including removal of the shrimp-shaped organ behind the stomach, are not well-understood.
A new study, an attempt to document these patients’ outcomes in the long run, found declining survival rates over the first decade after surgery. The paper also identified a mixed bag of post-surgical health issues — raising questions about who should undergo surgery, what support is necessary after a pancreas procedure, and whether potential harms outweigh the benefits.
Gregory Wilson, an assistant professor of surgery at the University of Cincinnati Pancreatic Disease Center, started with a personal question: What had happened to his pancreatectomy and islet cell transplantation patients? Were they, in fact, recovering and getting back to their lives?
At first glance, the numbers were sobering. The Pancreatic Disease Center’s database indicated survival continued to steadily decrease over time, Wilson said — that’s at one of the nation’s leading centers for total pancreatectomy and islet cell auto-transplantation. He would later learn those numbers were in line with survival rates for other pancreas procedures, too.
Pancreas removal surgeries have been performed for a long time, but the addition of islet cell transplants is newer. Islet cells, in a healthy pancreas, are cell clusters that produce hormones needed to regulate blood sugar. A couple of decades ago, surgeons started transplanting islets from donor pancreases into people with compromised pancreatic function as a way to ward off diabetes. This procedure was tried as a treatment for type 1 diabetes, but never quite took off. Instead, it became a companion to pancreatic surgery, most prominently at two centers: the University of Cincinnati and the University of Minnesota.
Wilson and his colleagues in Cincinnati expanded their research to include other surgeries — 555 operations on 493 patients over 20 years (2000-2020). They also used the National Death Index to see which patients had died, and what their cause of death was. Five years after surgery, 81% of patients were alive. A decade after surgery, just 64% of patients were still alive, and the median age at time of death was 51.
The leading causes of death were infection (16%), cardiovascular disease (13%), and diabetes-related issues (11%).
The researchers also found 59% of the patients had insulin-dependent diabetes 10 years after surgery, despite the fact that only 10% of patients went into surgery with insulin-dependent diabetes. This is not unexpected, since other research has shown people who have part or all of their pancreas removed (or diseased) have a higher risk of developing diabetes. Islet cell transplants are meant to help make up for part of that loss.
Opioid use was the issue most strongly associated with worse overall survival. Six patients died by suicide, the earliest cause of death, and a surprisingly high number that points to a need for better interventions, Wilson said.
The findings, presented at the Southern Surgical Association last month and published in the Journal of American College of Surgeons on Tuesday, paint a complicated (and still incomplete) picture of the risks of these surgeries and their aftermath.
The findings indicate chronic pancreatitis care “needs to advance well beyond surgery,” said Timothy Gardner, professor of medicine and assistant dean for medical student research at Dartmouth’s Geisel School of Medicine. “These patients require multidisciplinary care, both pre- and post-operatively, and no patient should undergo surgery without an effective care team in place that can manage patients closely.”
Chronic pancreatitis patients, especially those with advanced disease, are in a difficult situation. While many people don’t know what caused their disease, a sizable slice of chronic pancreatitis cases are driven by alcohol use. In the group Wilson studied, tobacco use was also commonplace, with 47% being current smokers and 18% former smokers. Many continued smoking (38%) and using opioids (30%) every day after surgery, as of their last follow-up visit. And 16% of patients continued to have alcohol use disorder upon their last follow-up, which ranged from two to 10 years after surgery.
Many patients developed diabetes, which could have contributed to the number of deaths from infections, such as pneumonia and urosepsis, years after surgery, Wilson said.
Numerous factors could have contributed to patients’ deaths, but it’s difficult to tease out those details, Wilson said. He sees his study as a starting point for more research.
Since this study is retrospective, and only includes the University of Cincinnati center’s pancreatitis surgery patients, the results could be skewed. Ideally, the study would include a control group of patients who did not undergo surgery for their condition, and compare the two groups’ outcomes. Wilson said he and his colleagues tried “really hard” to find such data, but ultimately could not.
The paper analyzed overall survival in patients who had one or more of these surgeries: total pancreatectomy with islet cell auto-transplantation (49% of patients), duodenal preserving pancreatic head resection and/or drainage procedure (22%), pancreaticoduodenectomy (16%), and distal pancreatectomy (13%).
Mixing all of the surgery outcomes together makes the paper less helpful than it could have been, said Suresh Chari, professor and deputy chair of the Department of Gastroenterology, Hepatology, and Nutrition at M.D. Anderson Cancer Center.
“I want to know, when you send a 13-year-old child to a total pancreatectomy with islet cell transplantation, what can you tell the mother about how this person is going to do in the future?” Chari said.
STAT asked Wilson for survival data among patients who had total pancreatectomy with islet cell transplant. He said his team did not have separate outcomes for that group. “We certainly do more total pancreatectomies and islet autotransplantation than many other centers, so our patient population is slightly different than centers that do not offer this procedure,” he said. There were slight differences in patient outcomes based on the type of surgery, but statistical analyses of the combined data did not show a difference in overall survival by type of surgery, Wilson said.
Chari argued the paper also had an opportunity to show how well islet cell transplantation delivered on its promise of helping people avoid diabetes after pancreas surgery. If many patients develop diabetes within 10 years of the surgery, “then what did you achieve by doing that islet cell transplantation? Maybe bought them a few years,” he said. Chari was part of a short-lived islet cell transplant program at the Mayo Clinic in the mid-2000s, and said he refers patients to Cincinnati for treatment.
Many patients do benefit greatly from surgery, mostly when they have exhausted their other options, clinicians told STAT.
“Those are the patients we usually see — the patients who continue to struggle, have daily pain requiring narcotics, can’t live their life because they’re either in and out of bed all day or in and out of the emergency department every so often, missing work, they can’t keep a job,” Wilson said.
There are no clear-cut answers in Wilson’s study, but it is a reflection of the complex reality. Chronic pancreatitis patients are, generally speaking, an already vulnerable group. Add major surgery into the mix, and any preexisting troubles intensify. A dependence on painkillers before surgery will only become harder to break after a major procedure, for example. Similarly, any latent mental health concerns or cracks in a person’s support system can grow during the intense and challenging recovery process. Patients must also commit to long-term care, in some cases transforming their lives, in order to avoid becoming ill again.
That’s why the months and years after surgery are key, Wilson said. He is now working with colleagues at the University of Cincinnati to build a more robust post-surgical support system for patients, one that can flex to include psychosocial care, addiction specialists and more.
And to Chari, that’s why screening patients on the front end, and thoroughly advising them about their options, is crucial. “All I’m asking is that for the sake of science, for the sake of patients, put out the information about what it is like to do this, long-term,” he said. “And next time I see a patient that meets these criteria and wants [a surgery] done, I can reassure them that these are the data: this is what you can expect in five years, 10 years.”
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