OHSU Study: Misdiagnosis of MS is Costing Health System Millions Per Year

Study finds most MS experts surveyed have seen patients in last year who've been misdiagnosed

May 9, 2012 -- It is relatively common for doctors to diagnose someone
with multiple sclerosis when the patient doesn't have the disease — a
misdiagnosis that not only causes patients potential harm but costs the
U.S. health care system untold millions of dollars a year, according to a
study published online today in the journal Neurology.

The study is based on a survey of 122 multiple sclerosis specialists
nationwide and was conducted by researchers at Oregon Health
& Science University and the Portland Veterans Affairs Medical
Center. Neurology is the medical journal of the American Academy of
Neurology.

The survey found that all but six of the multiple sclerosis specialists —
more than 95 percent — had seen at least one patient within the past
year who had been diagnosed with MS by another medical provider, but
the MS specialist "strongly felt [the patient] did not in fact have MS."

Almost three-quarters of the MS specialists said they had seen at
least three patients within the past year who they believe had been
misdiagnosed. More than one-third of respondents said they had seen
six or more patients within the past year who had been misdiagnosed. In
total, the study estimated that the 122 MS specialists had seen almost
600 patients within the past year who had been misdiagnosed with MS.

Many of the MS specialists said a significant percentage of these
misdiagnosed patients had already begun disease-modifying therapy
for MS, which carries potentially serious side effects and can be very
expensive, often at least $40,000 per patient per year. Based on the
responses from the MS specialists, the study estimated that the 122
MS specialists had seen approximately 280 patients who had been
misdiagnosed and were receiving MS treatment — costing the health
system at least $11 million per year in unnecessary and inappropriate
treatment for that group of patients alone.

"What we found was that the misdiagnosis of MS was common -
- perhaps more so than previously thought. This has significant
consequences for patients and for our health care system as a whole,"
said Andrew Solomon, M.D., the lead author of the study.

Solomon worked on the study while he was a post-doctoral fellow in
multiple sclerosis at OHSU and at the Portland Veterans Affairs Medical
Center. Solomon is now an assistant professor at the University of
Vermont College of Medicine and is a member of the University of
Vermont Medical Group Neurology Service at Fletcher Allen Health
Care.

Dennis Bourdette, M.D., the senior author of the study and director
of the OHSU Multiple Sclerosis Center, said the misdiagnoses not
only meant patients were getting expensive and potentially harmful
treatments they didn't need, but they were also not getting the
appropriate treatment for the diseases they may have had.

"These patients were getting the wrong treatment — and missing out on
the correct treatment," Bourdette said.

The survey also detailed the emotional and ethical challenges of
informing a patient of a misdiagnosis. More than two-thirds of the
MS specialists said that informing a patient with a diagnosis of MS

that they likely did not have the disease was more challenging than
informing a patient of a new diagnosis of MS. And, in an especially
surprising finding, about one in seven of the MS specialists said they
had sometimes chosen not to inform a patient of their suspected
misdiagnosis, citing among their reasons the fact that the patients
were not receiving MS treatment, or the potential psychological harm in
changing a diagnosis.

The study underlines a significant but underappreciated problem
within the U.S. health care system: the dangers, costs and physician
challenges associated with misdiagnosed diseases.

In recent years, medicine has begun paying more attention to medical
errors and adverse medical events -- giving a patient the wrong drug or
too much of it, for example, or not preventing avoidable infections. But
less attention has been paid to the rate of diagnostic errors — which
experts estimate average about 10 percent across a wide variety of
medical conditions.

Often, these diagnostic errors happen with diseases, like MS, "that
don't have a definitive test," said Eran Klein, M.D., Ph.D., the third co-
author of the study and an assistant professor in OHSU's Department
of Neurology. "These diseases instead require well-honed skills of a
professionally trained clinician who is knowledgeable about the disease,
can study a patient's medical history, perform a detailed physical
examination and evaluate additional medical information to make the
proper diagnosis. This study sheds light on the importance of clinical
expertise in recognizing and correcting diagnostic error."

The study was funded by the Department of Veterans Affairs, the
National Institutes of Health and the Partners MS Fellowship Award.

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