Many people who have surgery for chronic pancreatitis continue to have health struggles in the years afterward — with some dying at a young age, a new study finds.
The study, done at one U.S. medical center, is the largest to look at overall survival in the years after people have surgery for chronic pancreatitis — a condition in which the pancreas becomes permanently damaged by inflammation.
And it found that while short-term survival was high, more than one-third of patients died within 10 years of surgery, often at a young age.
Among patients who died, the median age at death was about 50. That means half were younger than that.
Experts said the findings underscore how serious chronic pancreatitis can be, and how important it is for patients to have long-term care after surgery.
"It can't just be go to your primary care provider once a year," said lead researcher Dr. Gregory Wilson, an assistant professor of surgery at the University of Cincinnati College of Medicine, in Ohio.
Instead, he said, patients need continuing care for physical health conditions like diabetes, and in many cases, psychological counseling and care for addiction — whether to alcohol, smoking or the opioids many patients are prescribed to manage their pain.
The pancreas is a vital organ that produces enzymes that aid digestion and hormones that regulate blood sugar. Chronic pancreatitis involves ongoing inflammation in the organ that disrupts its normal functioning.
Its causes vary and are sometimes unknown, but long-term heavy drinking is one big contributor. Smoking is a risk factor, as well. Some cases are related to inherited gene mutations.
The condition also causes a range of problems: People may have to take digestive enzymes to manage weight loss and diarrhea, and many develop diabetes. But possibly the most debilitating symptom is chronic abdominal pain, which means many patients use painkillers for years.
When those measures are not enough, surgery to remove part or all of the pancreas may ultimately be recommended.
"By the time patients come to see us," Wilson said, "it's not uncommon that they're dependent on opioids just to get through the day."
Surgery can often ease the pain and improve people's quality of life, he noted.
But as the new study highlights, that is not the end of the story.
The findings — published Jan. 24 in the Journal of the American College of Surgeons — are based on 493 patients who underwent surgery for chronic pancreatitis. All were treated at the Cincinnati medical center between 2000 and 2020.
Overall, more than 95% were still alive one year after surgery. But 10 years out, the survival rate had dropped to 63%, even though most patients were middle-aged at the time of their surgery.
Wilson's team also found that despite their severe disease, many patients continued to smoke (38%) or abuse alcohol (16%) in the years after surgery. And one-quarter were still taking opioids daily.
As for the causes of death, infections were the most common, followed by heart disease or stroke, and diabetes complications. Wilson said it was surprising to see infections top the list, and it's not clear why. But, he speculated, it could be related to diabetes, which can make people more vulnerable to infections.
Just under 10% of deaths were attributed to substance abuse, while six patients died of suicide.
"This is a chronic, life-shortening disease," said Dr. Emily Winslow, chief of hepatopancreaticobiliary surgery at MedStar Georgetown University Hospital in Washington, D.C.
Winslow, who was not involved in the study, agreed that patients need long-term care for the various aspects of the disease — including help with continued smoking or drinking, and psychological counseling.
She noted that while the number of suicide deaths in the study was relatively small, "it should get everyone's attention." Could some of those deaths, for example, be related to ongoing chronic pain the surgery did not relieve?
The difficulty, Winslow said, is that there is no "quarterback" of the medical team when it comes to chronic pancreatitis. That makes it different from, say, heart disease, where a cardiologist is typically that leader.
Instead, Winslow said, the surgical team would typically manage care for a few months after the procedure. Patients may also see an endocrinologist to get a diabetes management plan. But usually, no one is coordinating the bigger picture.
"Patients need psychosocial support and care after surgery," Wilson said. "I wonder if that's the piece we're missing."
Both doctors stressed that people with chronic pancreatitis should not fear surgery. Many patients do well afterward — and, Winslow pointed out, the issues surrounding the disease will not be solved by avoiding surgery.
Instead, Wilson said, the system needs to do a better job of meeting patients' needs.
The U.S. National Institute of Diabetes and Digestive and Kidney Diseases has more on chronic pancreatitis.
SOURCES: Gregory Wilson, MD, assistant professor, surgery, University of Cincinnati College of Medicine, Ohio; Emily Winslow, MD, chief, hepatopancreaticobiliary surgery, MedStar Georgetown University Hospital, Washington, D.C.; Journal of the American College of Surgeons, Jan. 24, 2023, online