Cyberchondria: the one diagnosis patients miss

Physicians say patient anxiety is increasing because of medical information read online, with self-diagnoses of diseases like fibromyalgia and lupus.

By — Posted Jan. 30, 2012

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When Chicago family physician Kit C. Lee, MD, asks patients for their symptoms during office visits, some already have diagnosed their illness.

By visiting the Internet first.

People have been using the Web to find health information for more than a decade. But Dr. Lee and other physicians say they are seeing an increase in patients' worries about their health due to material they read online. The result is what is known as cyberchondria -- an unfounded anxiety concerning one's wellness brought on by visiting health and medical websites.

Doctors say the uptick in cyberchondria cases is not surprising, considering the nation's use of the Web to seek information on such things as car repairs and cooking. Seventy-two percent of Americans use an online search engine, according to a May 2011 Pew Research Center survey. That figure is up from 52% in January 2002, data show.

Eight in 10 Americans who use the Internet look for health information online, according to 2010 data from the Pew Internet and American Life Project released in February 2011. Many who research such information online determine that they have a serious medical problem, according a 2008 survey of 515 Microsoft employees that was published in the November 2009 issue of ACM Transactions on Information Systems. Nearly nine in 10 respondents reported at least one instance in which a Web search for basic medical symptoms led to their review of content on more serious illnesses.

"The Internet is just a rich source of information in general," said emergency physician Rahul Khare, MD, an assistant professor in the Dept. of Emergency Medicine at Northwestern University Feinberg School of Medicine in Chicago. "Naturally, as more medical sites are available, we're going to go to the Web with health questions."

The increase in using the Internet to self-diagnose comes at a time when many physicians are encouraging patients to be more involved in their medical care to help improve health outcomes, particularly for chronic illnesses. Some health professionals say researching medical concerns on reputable websites can be a positive step for patients, because it helps them become more educated about their health. In doing so, patients sometimes accurately diagnose themselves, particularly when it involves common illnesses, such as appendicitis and strep throat, doctors said.

More often, though, the large number of health websites, some of which are unreliable, mislead patients into thinking they have a medical problem, say health professionals. They say the outcome frequently is heightened patient anxiety and unnecessary screening tests that can result in medical complications. Cyberchondria also demands that physicians spend more time in office visits as they discuss why the individual thinks he or she has a particular disease, educate the patient on why that diagnosis is unlikely and then determine the true cause of the symptoms.

"In this era, self-diagnosis is inevitable," said Dr. Lee, clinical assistant professor in the Dept. of Family Medicine of Loyola University Chicago Stritch School of Medicine. "We as physicians need to approach this as teachers" and listen to patients' concerns and educate them about their symptoms.

Sometimes that means taking longer than a standard office visit, "but you have to put that time into it," Dr. Lee added.

Helping ease patient anxiety

Similar to those with hypochondria, patients with cyberchondria have trouble understanding that most symptoms, such as fatigue and headache, are not the result of an underlying disorder, said internist Gary Rogg, MD, assistant professor and assistant director of the Dept. of Medicine at Montefiore Medical Center in New York. He said such patients also tend to have underlying anxiety or depression, and they struggle to distinguish credible health facts from the mass of information they read online and hear from people.

Dr. Khare and his colleagues in their Chicago emergency department have noticed an increase in cyberchondria, particularly among young adults. He sees at least one patient every shift who has researched his or her symptoms online and comes in with a diagnosis.

Among the most common of those self-diagnoses are fibromyalgia and lupus, which often have vague symptoms such as fatigue, fever and joint pain, Dr. Khare said. Similar patient anxieties are being seen at the Winston-Salem, N.C., office of family physician John Spangler, MD, MPH.

In those cases, Dr. Spangler asks the patient to describe the specific type of pain he or she is experiencing and when it began.

"We need to listen to what patients say and not just tell them, 'Don't worry about it,' " said Dr. Spangler, a professor in the Dept. of Family and Community Medicine at Wake Forest School of Medicine in North Carolina.

Many times, patients will say they recently injured their back or another tender area, which usually enables the physician to rule out fibromyalgia, he added.

Even symptoms of the common cold, including a runny nose and sore throat, lead patients to fear worst-case scenarios after they look at health information online, Dr. Khare said. One such patient diagnosed herself with non-Hodgkin's lymphoma.

"Patients have become way more knowledgeable in some aspects" than they were in the past, he said. "But too much information without proper guidance can cause anxiety or fear."

To help patients navigate health information on the Web, he recommends that they visit reliable sites, such as those by Cleveland Clinic and Mayo Clinic.

Instead of dismissing a patient's complaint, Dr. Rogg recommends that physicians start with an open-ended question about what is going on and when the symptoms began.

Dr. Khare asks such patients what they read online that led them to their diagnosis.

"Let the patient talk, because that gets you a better history," Dr. Khare said.

If the patient's self-diagnosis is incorrect, he explains why he is not concerned about them having that particular disease.

But sometimes a patient persists in believing that he or she is sick. In those cases, Dr. Rogg tries to spend a few extra minutes reassuring the individual, rather than ordering a test to screen for the condition. He also talks to the patient about the potential harms of screening and why they do not outweigh the possible benefits of the test in that particular situation.

"I try to impress upon patients the importance of persistent symptoms," Dr. Rogg said. "I tell them, 'If you have a cough that lasts a week and goes away, it's nothing bad. If you have a cyst that pops up, wait a couple weeks and see what happens.' "

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Most commonly searched health issues

Physicians increasingly are seeing patients with cyberchondria -- an unfounded anxiety concerning one's wellness brought on by visiting health and medical websites. The percentage of U.S. Internet users who have looked online for information on the following health issues:

66%: Specific disease or medical problem
56%: Certain medical treatment or procedure
44%: Doctors or other health professionals
36%: Hospitals or other medical facilities
33%: Health insurance, including private insurance, Medicare and Medicaid
29%: Food safety or recalls
24%: Drug safety or recalls
22%: Environmental health hazards
19%: Pregnancy and childbirth
17%: Memory loss, dementia or Alzheimer's
16%: Medical test results
14%: How to manage chronic pain
12%: Long-term care for an elderly or disabled person
7%: End-of-life decisions
28%: Another health topic not included in the survey
80%: At least one of these topics

Source: "Health topics: 80% of internet users look for health information online," Pew Internet & American Life Project, Feb. 1, 2011 (link)

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External links

"Cyberchondria: Studies of the Escalation of Medical Concerns in Web Search," Microsoft Research, November 2008 (link)

"Health Topics: 80% of Internet users look for health information online," Pew Internet & American Life Project, Feb. 1, 2011 (link)

"Search and email still top the list of most popular online activities," Pew Internet & American Life Project, Aug. 9, 2011 (link)

Health information, Cleveland Clinic (link)

Diseases and Conditions, Mayo Clinic (link)

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