AACE 28th Annual Scientific & Clinical Congress:

Managing Myth-Informed Patients: Tips from the Trenches

With Jonathan D. Leffert, MD, Neil Schaffner, MD, Michael Polisky, MD, and Kevin Pho, MD

With growing numbers of patients turning to Google for medical advice, then challenging their physician, this session focused on how to best help patients sort out facts from fiction, myths from effective treatments, and keep your sanity in the process. In addition, strategies to developing an online presence are shared.

Tips to manage patients who attempt to self-diagnose with internet searches.

Responding to Patients Who Think They Know Better 

A 62-year-old woman presented to our wellness clinic with ''hormonal symptoms," said Jonathan D. Leffert, MD FACP, FACE, ECNU, a clinical endocrinologist and the managing partner of the North Texas Endocrine Center in Dallas. Noted: She was a nonsmoker who used alcohol moderately.

He referred to this patient, referred to as Marilyn, as a good example of the type of patients he has been seeing more often in his clinic, in a presentation aimed at Debunking internet Myths: What is the Most Effective Response?1 presented during the American Association of Clinical Endocrinologists Annual Meeting in Los Angeles, California.

Marilyn represents a typical patient who collects medical information from the internet, perhaps gets confused or anxiety, sometimes going to multiple physicians and alternative care providers, then lands in the endocrinologist's office.

Dr. Leffert shared experiences and some effective recommendations that clearly struck a chord—and sometimes a nerve—with this full-house audience. “It seems Dr. Google—or at least the inundation of information—has become a common affliction in the clinics of all the practitioners, endocrinologists, internists, general practitioners, and nurse practitioners, in attendance.  

Dr. Leffert's premise: internet medicine is not going away, patients are not going to stop searching online for answers to self-diagnose, often from less than credible sources, and ultimately talking about their discoveries during office visits. Thus, physicians need to be prepared to work with their patients’ beliefs.

Long-term, he said, organizations such as AACE should become more active on social media, mounting a campaign to overcome the ''fake news'' about medicine that thrives on the internet to ease the burden on health providers.

What Is the Allure of the Internet?

Patients turn to the internet for many reasons, Dr. Leffert said. According to a recent Gallup poll, only 36% of people polled indicated having confidence in the healthcare system.2 And 20% of people expressed skepticism about scientists.3

The attraction to seeking medical answers online is growing—in the last 5 years, 55% of consumers indicated relying more on the internet for answers to health concerns.2 However, 80% also acknowledged having some concern about the accuracy of the information they find.4

That's a statistic that physicians should note and can use to their advantage, Dr. Leffert said.

"While people are quick to go online in search of an answer, they are not getting information they are satisfied with so they come to their healthcare provider armed with questions and concerns," Dr. Leffert said. "It is our chance to education them with evidence-based data, and then give them responses that are tailored to their personal medical circumstances, and ultimately to provide assurances regarding their individual clinical needs."

Physicians might welcome these encounters, treating them as an opportunity to  build patients' trust in well-founded medical information and to extinguish their reliance on questionable internet information sources.

Managing Patients Who Are Not So Easily Redirected

“While ‘Marilyn’ complained of fatigue, low libido, depression, irritability, cold intolerance, and recent weight gain, her medical history was unremarkable,” Dr. Leffert told attendees. The only medical clinical concern she presented with was hypertension, for which she was on stable therapy with the calcium channel blocker amlodipine (Norvasc). 

She arrived frustrated, having seen several different physicians, none of whom took her symptoms seriously or offered any solutions to help her feel better.   

Dr. Leffert told EndocrineWeb: “She had been taking a hormone cocktail for three months as a solution to rid her of her bothersome symptom without any improvement when she presented at our clinic.”

Her hormone regime:

  • NP-thyroid (60 milligram QD)
  • Bioidentical estrogen (7.5 mg/mL)
  • Testosterone (11 mg/mL cream QD)
  • Progesterone (200 mg QD)

When her hormone levels were checked, her lab values were: free testosterone—249 ng/dL, progesterone—2.3 ng/mL, estradiol—199 pg/mL , follicle-stimulating hormone (FSH)—26 mIU/mL, T4 —8.9 ng/dL, free T3—3.5 pg/mL, and thyroid stimulating hormone (TSH)—0.61 mIU/L.

"This patient didn't have any idea that having a testosterone of [nearly] 250 was problematic," Dr. Leffert said. “I told her, 'That level is actually kind of a low normal for a man.'”

At that point, this patient was ready to accept his advice. "She was ready to go in a different direction because she was not getting any benefit from these medications, and she had sought out my advice to find a better answer," he said, noting she was taking hormones for which there was no sound basis in the first place.

Letting the Evidence and Guidelines Inform the Patient

This patient case offers a good example of someone who found a treatment on her own, sought out someone to prescribe the hormone therapy, yet found it to be of no help in elevating her symptoms, Dr. Leffert said.

“Managing this patient’s expectations can be enhanced by explaining the current guidelines on androgen therapy from the Endocrine Society,5 which specifically recommend against making a diagnosis of androgen deficiency syndrome in perimenopausal and postmenopausal women because of there is no well-defined syndrome and the data correlating symptoms with androgen levels are lacking.”

Most pointedly, the guidelines provide a recommendation against the use of testosterone or dehydroepiandrosterone (DHEA) for general symptoms or in women with hypopituitarism, adrenal insufficiency, on glucocorticoid treatment, and those who have undergone surgical menopause since there is no data to support efficacy or long-term safety.5

In addition, this patient should be made aware that there is also no evidence basis to support thyroid hormone therapy in individuals with positive TPO antibodies in this clinical setting. Nor is there any valid rationale for removing gluten from the diet, nor evidence of specific benefit from natural desiccated thyroid hormone products—especially when the thyroid function is normal.5

Patients, such as Marilyn, typically respond well to concrete recommendations based on professional guidance, as they are more willing to hear clinical advice in the face of failed self-treatment.

Effective Strategies for Information-Driven Patients

Over the years, Dr. Leffert said that he has developed an empathetic approach when dealing with information-seeking patients, which helps them to have a more open mind, he said.

"The patients we are talking about are a very somatic population," he told EndocrineWeb. "But their somaticism doesn't mean they aren’t bothered by something requiring clinical attention."

By and large, the patients who have been surfing the internet for answers have seen a number of doctors who have offered no resolution to their symptoms or health concerns, he said. "So by providing them with facts, debunking the diagnosis or a perceived treatment intervention, while listening and offering emotional support, I earn their trust so we can work together to find a solution."

He also discusses lifestyle patterns and makes some suggestions, such as ways they might improve their sleep quality. He offers only as much information as the patient appears ready to act on based on the evidence, but in the end finds that ''a better approach is dealing with the emotional'' side of their concerns. Most of all, patients need help interpreting the information they are given, which is usually the most common obstacle to achieving a solution, he said.

Another article of interest: Debunking Weight Loss Products, Pill, Procedures

These are the types of patients who are likely to end up in your office, he said, because many of the common diseases may be related to thyroid, adrenal, and testosterone dysfunction, which present with vague symptoms and lab values that require experienced clinical interpretation.

To be successful, consultations with these types of patients will require more time than usual and longer explanations, said Dr. Leffert. And, there is no formal training for managing patients who present with such clinical patterns—because ''I read it on the internet."

While we are comfortable running more tests, for these patients, an office visit must start with listening, Dr. Leffert said. One phrase that he has found most constructive in getting patients to accept his advice is: "I do evidence-based medicine."1

Another important point to keep in mind, Dr. Leffert said, is that lies spread faster than truth so news that’s usually too-good-to-be true is often more enticing than actual medical solutions, and more likely to gain interest, be adopted, and shared.6

Addressing Challenging Patients in Practice

Physicians attending the session agreed that dealing with internet myths are a daily issue with patients in their offices, they told EndocrineWeb.

For example, Neil Schaffner, MD, an endocrinologist in private practice in Auburn, Alabama, said that on a daily basis, "I'd say 50% of my patients will give some reference to something they read on the internet or saw on TV."

The most difficult part for him is that "I have to quell my anger." His reaction stems from the attitude that many patients come with—an unquestionable certainty— that what they found on the internet or heard on the television is superior to anything their physician might tell them.

The key, said Michael Polisky, MD, an endocrinologist on staff at Valley Presbyterian Hospital in Van Nuys, California, is that "We need to present ourselves in a way where [it's clear] we have their best interest at heart. I want patients to come in with a sense of openness and trust, rather than such strong skepticism [for conventional medicine]."

In the Information Age, Navigating Clinical Care Wisely

Our professional organizations need to acknowledge the problem that clinicians face when so many patients are accessing inaccurate information on the internet and need help interpreting what it means or doesn’t mean for them personally,1 Dr. Leffert said.

Having a presence on social media, in particular, initiating an educational campaign aimed at counteracting popular social media sites that spread inaccurate information would be of great value since it would back us up, he said.

Ideally, a campaign that is coordinated among all the major endocrine organizations, and provides a consistent message would be immensely beneficial. At the same time, physicians need training about effective approaches to countering the myths and wrong information that so many patients hold as true, Dr. Leffert said.

On the up side, Dr. Leffert cited a study from a group from Australia, who reported that while “Dr. Google” (ie, web-based health information) is here to stay, consumers do still value the physician in helping them navigate and interpret information they find on the internet.7

Taking the Reins Digitally: Advice from an MD Social Media Guru

In a keynote address, Kevin Pho, MD, known for his blog KevinMD.com and an active Twitter presence @kevinmd, encouraged endocrinologists as well as primary care practitioners to take to social media to help debunk medical myths from circulating unimpeded by establishing online presence.

How to start? Dr. Pho said it does not have to be complicated. Begin by uploading a headshot, creating a brief bio, and signing up for professional social media sites such as LinkedIn and Doximity as well as Twitter. He calls these ''digital CVs."

In an interview with EndocrineWeb, Dr. Pho offered this insight: "Every physician already has some kind of online presence from third-party sites like Healthgrades, Vitals or Yelp, which scrape publicly available information of every practitioner in the United States and creates online profiles for them, whether they want one or not." Therefore, you are better off taking charge so you are be in control of your digital footprint.

And, yes, he acknowledged that time is a barrier. "The initial set-up takes a few hours but it's well worth it. After all, it's always better to define yourself than be defined by someone else." In addition, look for topics that may interest your patients and share, and when you feel moved, offer comments, and write commentary about medical advances or answers to commonly asked questions to build your presense. 

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