We seem to come across more and more articles about physicians’ inability to properly diagnose illnesses. A review of the thousands of questions received from our members indicates that diagnosis confusion and misdiagnosis are frequent problems. For those with reflux disease symptoms, a misdiagnosis of GERD symptoms and treatment can increase the risk of serious problems over time. What can you do if you are one of those with GERD symptoms? We think there is a lot you can do – starting with taking responsibility for your own medical care.
This recent headline on FoxNews.com really caught my attention: “At least 1 in 20 outpatients misdiagnosed every year, study shows.” This article focused on non-hospital based diagnosis (or should I say misdiagnosis) and summarized the results of a recent study published in the BMJ Quality and Safety Journal. Another article in the Washington Post by Sandra Boodman highlighted this issue for a physician diagnosed with GERD:
Until it happened to him, Itzhak Brook, a pediatric infectious disease specialist at Georgetown University School of Medicine, didn’t think much about the problem of misdiagnosis. That was before doctors at a Maryland hospital repeatedly told Brook his throat pain was the result of acid reflux, not cancer. The correct diagnosis was made by an astute resident who found the tumor — the size of a peach pit — using a simple procedure that the experienced head and neck surgeons who regularly examined Brook never tried. Because cancer had grown undetected for seven months, Brook was forced to undergo surgery to remove his voice box, a procedure that has left him speaking in a whisper. He believes that might not have been necessary had the cancer been found earlier.
What causes misdiagnosis of GERD symptoms and treatments?
In another 2012 quality study published by BMJ titled “Challenges of making a diagnosis in the outpatient setting: a multi-site survey of primary care physicians” found the primary reason for primary care physician misdiagnosis is “knowledge gaps.” Knowledge gaps? Really?
Perhaps we shouldn’t be surprised. Primary care physicians (PCPs) are the “first line of defense” for a healthcare system that is designed to avoid costs whenever possible. Clearly, they can’t be experts on all illnesses, injuries, and diseases. When you consider their workload, the amount of time they can allocate to each patient, and the limited diagnostic tools available at the PCP setting, we can begin to understand how errors happen. However, in the study with 1,054 physicians responding, 19.9% cited “inadequate knowledge” as the common cognitive factor resulting in misdiagnosis. As much as we hate to admit it about our primary care physicians, it appears that “knowledge gap” is the right term and a big factor in misdiagnosis.
What does this mean to those with reflux disease?
GERD symptoms and treatments require more than a visit your family doctor. RefluxMD’s experts insist that an endoscopic examination and a pH-test are necessary – and neither of those tests can be performed by PCPs. RefluxMD estimates that 65% to 70% of all GERD diagnosis is performed by PCPs. Is it any wonder then that research studies have documented that over 30% of all daily PPI users, when properly tested, are not refluxing and do not require those powerful medications?
For those inaccurately diagnosed with GERD by a physician, the most common treatment is daily PPI use. Unfortunately, this puts those individuals at risk of serious negative side effects, which include malabsorption of calcium, which can result in the weakening of bones, malabsorption of magnesium that can lead to cardiac problems, an increased risk of c. Difficile bacterial infections and an increased risk of pneumonia. All those risks are mentioned on the FDA mandated label insert, but in 2016 researchers found additional medical risks including 1) a 20 estimated increased risk of heart attack; 2) a 28% estimated increase in risk of chronic kidney disease; 3) an estimated increased risk of 98% of kidney failure, and; a 42% to 52% increased risk of dementia. Daily PPI use can also reduce the effectiveness of other drugs such as Plavix, a popular anticlotting agent used by heart patients.
RefluxMD’s member survey highlights the problem
Ninety-one RefluxMD members and website visitors responded to a poll to determine what tests physicians used to diagnose them with GERD. Here are the results to the following question:
When a physician initially diagnosed you with GERD, how was that diagnosis determined?
A) Exclusively based on a discussion of my symptoms – 34%
B) Symptom discussion and endoscopy – 40%
C) Symptom discussion, endoscopy, and pH-test – 10%
D) All or some of the above plus other diagnostic tests – 16%
What does this tell us?
- 34% were diagnosed with only a discussion of the symptoms. Those in Group A cannot be confident that GERD is causing their symptoms. Without looking at the esophagus and confirming that acid is reaching above the lower esophageal sphincter with a pH-test, there is no conclusive evidence to support a diagnosis of GERD.
- Group B saw a specialist and they received an endoscopic examination of their esophagus. If damage to the esophagus was noted, there is a high probability that GERD could be the cause of the damage and the symptoms. However, those with a “normal” endoscope and subsequently diagnosed with GERD are also at risk without a pH-test to confirm the presence of reflux.
- Only 26% of those responding to this survey, Groups C and D, had adequate diagnostic tests to determine GERD as the cause of their symptoms. The remaining 74% are at risk of a misdiagnosis.
What can you do to avoid a misdiagnosis of GERD symptoms and treatments?
The most important advice we can offer our members is to take responsibility for your disease if you have GERD or acid reflux symptoms. You should do everything you can to be “the expert” on your disease. Learn as much as you can about causes of GERD, its symptoms, diagnostic tests, treatment alternatives, and complications if your disease progresses. With that knowledge, we recommend the following:
- Don’t stop with your primary care physician. If you receive a diagnosis of GERD from your primary care physician, ask to see a specialist to confirm your diagnosis.
- Find a GERD expert. Then create a partnership with that physician to manage both your symptoms AND your disease.
- Get the proper diagnostic tests. At a minimum, you should have an endoscopic examination of your esophagus and a 24-hour pH-test.
- Discuss other diagnostic tests with your physician. These diagnostics can include barium swallow testing, biopsies (small tissue samples of the esophagus), or manometry.
- Don’t hesitate to seek a second opinion. If you have any concerns, get a second opinion to confirm the diagnosis of your physician.
Unfortunately, there is a real problem with misdiagnosis today so it is wise to take charge of your own health. Since GERD is a progressive disease, it can progress through several stages and can result is declining quality of life and serious health complications. Should your symptoms not respond to the treatment prescribed by your physician in a reasonable timeframe, then call your doctor to determine what next steps are available. If you are uncomfortable with the information or diagnosis you receive, then seek a second opinion — better to be safe than sorry. It’s your disease, and it’s your responsibility to get the best diagnosis available.