Largest Analysis Examining Barriers to EPI Diagnosis Finds Patients with Digestive Health Issues Overlook Their Symptoms
New survey, EPI Uncovered, shows individuals with chronic gastrointestinal troubles report lack of communication as a factor to underdiagnosis.
Many may not understand that exocrine pancreatic insufficiency might be one of the potential causes of their GI issues
Contact: Aimee Frank
Bethesda, MD (Oct. 25, 2016) — Digestive conditions affect 60 to 70 million Americans,1 and people with gastrointestinal (GI) issues often ignore their discomfort. According to EPI Uncovered, an American Gastroenterological Association (AGA) survey sponsored by AbbVie, individuals experiencing chronic GI symptoms wait an average of nearly four years to see a health-care professional and may not know if they have a condition such as exocrine pancreatic insufficiency (EPI).
The survey, which looked to uncover why so many may accept GI discomfort as being the new “normal,” found that embarrassment could be to blame. Three in five people with chronic GI issues who find it difficult to discuss their symptoms with their doctor (60 percent) cite being embarrassed as the reason for not disclosing their symptoms. Nearly half (47 percent) say they simply wanted to wait to see if their troubles would go away.
“Many patients are embarrassed by digestive discomfort and other symptoms, but their discomfort may be more than a nuisance — it could signal a digestive health problem,” said Dr. Phil Hart, study medical co-advisor and assistant professor of medicine in the division of gastroenterology, hepatology and nutrition at The Ohio State University. “Tracking your symptoms and feeling empowered to speak with your physician are important steps for individuals with chronic GI issues.”
Among the suspected causes of chronic digestive distress is EPI, which occurs when the pancreas does not produce enough enzymes to properly digest food into nutrients. EPI can be difficult to diagnose, because its symptoms are similar to those associated with more common GI conditions.
According to the survey, the most telltale symptoms that point physicians to EPI are frequent gas and/or abdominal bloating, unexplained stomach pains, frequent diarrhea, and foul-smelling, greasy stools. Of these symptoms, changes in the stool pattern are most specific to EPI.
“The inability for individuals to identify what’s causing chronic GI symptoms can prevent timely treatment and impact their everyday lives,” said Christopher E. Forsmark, MD, AGAF, professor of medicine and chief, division of gastroenterology, hepatology and nutrition at the University of Florida, Gainesville. “We are pleased that this survey helped us to understand barriers in physician and patient communications, which can delay an accurate and timely diagnosis and appropriate therapy.”
EPI Uncovered was conducted among U.S. adults who have experienced chronic GI issues (“patients”) and health-care professionals, including primary care physicians (“PCPs”) and gastroenterologists (“GIs”).* The survey is part of an ongoing AGA initiative to better understand how common GI health conditions impact individuals in the U.S.
Additional findings include:
There is a limited understanding of EPI and the pancreas’ role in digestion.
- Two-thirds of patients (66 percent) have never even heard of EPI and even more (78 percent) are not aware of the symptoms.
- Forty-two percent of patients admit to not being knowledgeable about the role of the pancreas in digestion.
- Physicians note that approximately one quarter of their patients (PCPs — 25 percent, GIs — 24 percent) who are eventually diagnosed with EPI were diagnosed with a different condition prior.
While communication barriers currently exist between patients and physicians, speaking transparently with a physician — and elevating the issue to a gastroenterologist — may help.
- GIs have a strong understanding of EPI and its symptoms — 98 percent of those surveyed have personally diagnosed someone with EPI.
- Seventy-eight percent of PCPs and 92 percent of GIs believe GIs should have all or most of the responsibility in educating patients about GI symptoms.
- Eighty-four percent of PCPs and 93 percent of GIs believe GIs should have all or most of the responsibility in treating EPI.
Exocrine pancreatic insufficiency, or EPI, is a medical condition that occurs when the pancreas doesn’t produce enough digestive enzymes to break down the carbohydrates, proteins and fats in foods and convert them into nutrients.1 Symptoms may include diarrhea, unexplained weight-loss, gas, bloating, and abdominal pain.2,3. This condition can be difficult to diagnose, because many of the symptoms mimic those of other GI disorders.3 EPI is commonly associated with certain diseases and conditions that affect the pancreas, such as chronic pancreatitis (inflammation of the pancreas), cystic fibrosis (a disease that affects the lungs and digestive systems), pancreatectomy (surgical removal of all or part of the pancreas), and pancreatic cancer.3,4 In 2016, EPI was introduced in the 10th edition of the International Statistical Classification of Diseases and Related Health Problems (ICD), the foundation for the identification of health trends and statistics globally and the international standard for reporting diseases and health conditions.5 Visit www.identifyEPI.com to learn more.
About the Survey
This survey was conducted online by Harris Poll on behalf of the American Gastroenterological Association with the financial support of AbbVie from May 17 through June 20, 2016 among:
- 1,001 U.S. adults ages 18 and older who have experienced at least two gastrointestinal issues, three or more times in the past three months (“patients”); and,
- 250 primary care physicians and 250 gastroenterologists in the U.S.
Figures for patients, primary care physicians and gastroenterologists were weighted, where necessary, to bring them into line with their actual proportions in the population.
View the infographic for more information.
About the American Gastroenterological Association
The American Gastroenterological Association (AGA) is the trusted voice of the GI community. Founded in 1897, the AGA has grown to include more than 16,000 members from around the globe who are involved in all aspects of the science, practice and advancement of gastroenterology. The AGA Institute administers the practice, research and educational programs of the organization. www.gastro.org.
AbbVie is a global, research-based biopharmaceutical company formed in 2013 following separation from Abbott Laboratories. The company’s mission is to use its expertise, dedicated people and unique approach to innovation to develop and market advanced therapies that address some of the world’s most complex and serious diseases. Together with its wholly-owned subsidiary, Pharmacyclics, AbbVie employs more than 28,000 people worldwide and markets medicines in more than 170 countries. For further information on the company and its people, portfolio and commitments, please visit www.abbvie.com.
- National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Digestive Diseases Statistics for the United States. Available at: http://www.niddk.nih.gov/health-information/health-statistics/Pages/digestive-diseases-statistics-for-the-united-states.aspx. Last accessed: October 2016.
- Forsmark C. Management of Chronic Pancreatitis. Gastroenterology. 2013;144:1282-1291.
- Fieker A, Philpott J, Armand M. Enzyme replacement therapy for pancreatic insufficiency: present and future. Clin Exp Gastroenterol. 2011;4:55-73.
- Keller J and P Layer. Human Pancreatic Exocrine Response to Nutrients in Health and Disease. Gut. 2005;54:1-28.
- Centers for Medicare & Medicaid Services. ICD-10-CM tabular list of diseases and injuries. 2017 codes tables and index. Available at: https://www.cms.gov/Medicare/Coding/ICD10/2017-ICD-10-CM-and-GEMs.html. Last accessed: October 2016.
*EPI Uncovered was conducted among 1,001 U.S. adults who have experienced at least two GI issues three or more times in the past three months and 500 health-care professionals, including 250 primary care physicians and 250 gastroenterologists.