Widespread lack of awareness of pancreatic insufficiency


Individuals experiencing chronic GI symptoms waited a mean of 3.7 years to see a health care professional, according to a recent survey.

Thus, for persons with chronic GI issues, inadequate communication may be a factor contributing to underdiagnosis. Fully 60% of patients surveyed cited embarrassment as the reason it was difficult to disclose GI symptoms to a doctor. Nearly half (47%) said they simply wanted to wait to see if their problems would go away. And 66% of patients interviewed had never heard of exocrine pancreatic insufficiency (EPI), while an additional 21% had heard of EPI but were not familiar with it.

The pancreas is highlighted and shown. iStock/ThinkStock
Only 22% of patients surveyed reported being aware of the symptoms of EPI. And 45% of patients said they were not knowledgeable about the role of the pancreas in digestion. The survey was conducted online, in the United States from May 17 through June 20, 2016, by Harris Poll on behalf of the American Gastroenterological Association. The 1,001 U.S. adults aged 18 years and older (“patients”) who were contacted had each experienced at least two gastrointestinal issues three or more times within the past 3 months. In addition, the survey contacted 250 primary care physicians and 250 gastroenterologists. Figures for patients, primary care physicians, and gastroenterologists each were weighted, where necessary, to bring them into line with their actual proportions in the population.

Financial support for the survey came from AbbVie, which manufactures a Food and Drug Administration–approved pharmaceutical used to treat EPI.

EPI occurs when the production of pancreatic enzymes is insufficient and the digestion of food incomplete. Untreated EPI can lead to distressing symptoms and malnutrition, Phil Hart, MD, of the Ohio State University, Columbus, said in an interview.

Diagnosis can be challenging, but a high index of suspicion for EPI is appropriate for patients with unexplained weight loss and those with a personal or family history of pancreatic disease. An additional red flag is “a greasy, oily film in the toilet water, a sign indicating the malabsorption of nutrients, Dr. Hart pointed out.

Other symptoms may also be relevant to the diagnosis. “EPI is certainly not the most common reason for symptoms like diarrhea, flatulence, weight loss, etc. That being said, it is much more common than is appreciated,” Christopher E. Forsmark, MD, AGAF, of the University of Florida, Gainesville, said in an interview.

EPI should frequently be considered in the differential diagnosis of such conditions as functional bowel disease, irritable bowel disease, and lactose intolerance.

“We do not have accurate methods for diagnosis. Many patients with EPI, even those with underlying pancreatic disease who are at highest risk, are not diagnosed and therefore not treated,” said Dr. Forsmark.

The gold standard for diagnosis is a 72-hour stool collection and fecal fat analysis, which is both labor intensive, expensive, and rarely done. Other tests more-commonly done are fecal elastase and serum trypsin level or a mixed triglyceride breath test.

Dr. Hart and Dr. Forsmark were involved as AGA medical advisers in the development and drafting of the EPI Uncovered survey.

Of providers surveyed who had treated patient with EPI during the past 3 months, 70% of gastroenterologists reported that they had initiated discussion of EPI symptoms, prevention, diagnosis, or treatment; 24% of the time, it was the patient who had initiated that discussion. In contrast, primary care physicians reported that only 35% of the time had they initiated the discussion, while 43% of the time it was the patient who had done so. In 6% of the cases, gastroenterologists were unsure who had initiated the discussion or did not recall who had done so, while the corresponding figure for primary care physicians was 22%.

“Patients will usually respond honestly to direct questions but may not spontaneously volunteer to report their symptoms. This means that their physician must ask these questions, and not assume that the patient would let them know if GI symptoms were present,” Dr. Forsmark said.

Some patients might be gently and sensitively pushed to reveal information, Dr. Hart said. For example, he may ask patients if their symptoms are interfering with their work or their social interactions. Further, in his experience family members may prove to be better sources of relevant information than patients themselves.

The physicians surveyed revealed that approximately one-quarter of their patients (25% of primary care patients and 24% of patients of gastroenterologists) who are eventually diagnosed with EPI had previously been diagnosed with a different condition.

“There is a widespread lack of knowledge on the part of patients and even doctors about the pancreas and about EPI. There is also a widespread lack of knowledge on appropriate treatment of EPI. Patients often are not treated at all, or are treated with an inadequate dosage of pancreatic enzyme replacement therapy,” Dr. Forsmark said.

Further, while 63% of gastroenterologists said they considered the pancreas when diagnosing gastrointestinal symptoms, only 48% of primary care physicians reported considering the pancreas in these situations.

“In our culture, discussing GI symptoms is particularly embarrassing,” said Dr. Forsmark. “This is not uniform across these symptoms. For instance, patients will often report heartburn or GERD [gastroesophageal reflux disease] or difficulty swallowing but are more embarrassed to report bloating or flatulence or changes in bowel habits, or even abdominal pain.”

“In addition, as we have all had these types of symptoms during our lives and they often spontaneously improve, our tendency is to ignore them for prolonged periods,” Dr. Forsmark said.

“A recent patient of mine presented with some loose stools and severe weight loss. This patient reported that symptoms – in retrospect – had been present for more than 6 months. And noted that although he had lost more than 40 pounds, he had been ‘trying to lose weight.’ ” This patient seemed to ignore the fact that “all previous attempts at dieting had been ineffective, and his diet had not really changed. Only when a family member insisted did he agree to an evaluation, Dr. Forsmark said.

Of gastroenterologists surveyed, only 2% had not personally diagnosed at least one patient with EPI. In contrast, 57% of primary care physicians surveyed had never diagnosed a patient with EPI. Gastroenterologists should have all or most of the responsibility in educating patients about gastrointestinal symptoms, according to 78% of the primary care physicians and 92% of the gastroenterologists surveyed. And gastroenterologists should have all or most of the responsibility in treating EPI, said 84% of the primary care physicians and 93% of the gastroenterologists.

While 96% of gastroenterologists reported being either very or somewhat familiar with pancreatic enzyme replacement therapies, among primary care physicians surveyed only 52% expressed a similar level of familiarity with these drugs.

According to the National Institute for Diabetes and Digestive and Kidney Diseases 60-70 million Americans are affected by all digestive diseases. The exact prevalence of exocrine pancreatic insufficiency in not well defined, it is a symptom of a pancreatic disorder such as chronic pancreatitis.

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