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Uncharted

  • Anjali Jain
    Correspondence
    Address correspondence to Anjali Jain, MD, Center for Health Services and Community Research, Children's Research Institute, Children's National Medical Center, and George Washington University, 111 Michigan Avenue, Washington, DC 20010.
    Affiliations
    From the Center for Health Services and Community Research, Children's Research Institute, Children's National Medical Center, and George Washington University, Washington, DC
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      The visit seemed straightforward. A 5-year-old girl and her mother had come to the clinic requesting a referral to a dermatologist for the child's facial molluscum contagiosum, which I had been treating topically for several months with little effect. We agreed, the mom and I, that a dermatologist was the best next step and she asked me to recommend one. As I was filling out the referral form, the mother asked me what the dermatologist was likely to do. I paused, realized I wasn't sure, and told her I would look it up and let her know.
      In the doctor's conference room, I looked for the well-worn dermatology textbook but it was not in sight. Other reference sources on the shelf and strewn about were not helpful. So I did what so many of us do these days—I Googled it.
      I've gotten pretty good at Googling. I know which keywords to put down first and how to search efficiently for answers to pointed questions. I usually type a word or medical term that is very general and pair it with a couple of specific yet relevant words to come up with a few highly apropos sites. This time, I entered “treatment” and “children” plus “facial molluscum contagiosum.” I was hoping to find something descriptive and accurate but ideally written for nonprofessionals—something about molluscum, the treatment options, and the risk of scarring or recurrence—that I could print and hand to Mrs Musa.
      Scanning through the first few links, I passed over sites that appeared unsophisticated or unofficial. I clicked on a link that seemed to be from a reputable source, someone with degrees after her name. After skimming the first paragraph, I stopped and dropped my hands for a moment. I felt a pit in my stomach. This article declared definitively, “Molluscum on the face signifies HIV infection until proven otherwise.”
      Was this true? Was it possible that this child at the age of 5 had undiagnosed HIV infection? The short paper was not referenced but written convincingly, with an air of authority. It was a page from a clinical-sounding but unfamiliar journal. In my own experience, having seen many cases of molluscum, this was indeed the first time I had seen lesions on the face. And the family had recently immigrated from North Africa, from a region where HIV rates are considerably higher than in Washington, DC.
      I thought about the robust little girl in her school uniform and her elegant mother waiting in the patient room—could it be that they both harbored the deadly infection?
      Immediately, I sought out my colleagues for advice and consultation. One of the other attendings in clinic that day had worked in parts of Africa where HIV was common. As I spoke, I saw a worried wave flit across her brow. Her experience confirmed what the article said. When she saw diffuse molluscum that included the face, it signaled HIV in her mind. But another attending weighed in: she had seen facial molluscum without anything more pernicious associated, yet those patients had not been recent immigrants from HIV-endemic areas.
      I hesitated to turn a short visit to pick up a referral form into a necessarily longer, intimate, and likely intrusive discussion with the mother about her background and sexual history. Informed consent and testing both the mother and daughter would probably be indicated. But having encountered this tidbit of information, at least partially corroborated by my colleagues, I had no choice but to confront it.
      I knew I was searching for a certainty that I was unlikely to find from any source other than the child and her mother. Still unsure about the best approach, I printed the article and entered the room. Fumbling to strike the right tone, I told the truth about what I had learned.
      “Mrs Musa, I have your referral form right here as well as the names of some pediatric dermatologists in the area.” Then I sat and pulled my stool close to her and away from the child absorbed in a book. I settled in as if I wasn't going anywhere, and turned on my hushed voice. I let the words out in a stream though, my discomfort and feigned confidence keeping me from pausing naturally at commas and periods.
      “While I was looking for information on treating the warts, I came across an article that made me concerned the warts on Hilary's face may be a sign of something more serious. It said that when people and children get these on their face, it could mean HIV/AIDS. I am not sure how often this happens but since you've come from a place where there is a lot of HIV, I thought I should ask you about it. So, tell me, is there a possibility that you might have HIV?”
      Mrs Musa looked at me blankly. Her daughter sat dutifully, turning the pages of the book, unruffled.
      “HIV?” I repeated the loaded question, uneasy with the silence. “You know, the virus that causes AIDS—human immunodeficiency virus?”
      Mrs Musa looked at me with a look of reproach, even disgust. “Yes, Doctor. I know what HIV is. Of course. What are you asking me?”
      “I am asking you if there is a chance that you or your daughter might have HIV and should we test for it in case the warts are a sign of it?”
      She almost snickered. Finally, she asked me a question—“Dr Jain, do you really think we would be let into this country without being tested for HIV? We were tested, and we are here—so you know what the tests showed.”
      “Negative?” I asked stupidly.
      “Negative. Twice.” She reassured me yet at the same time mocked my naiveté about our country's immigration policies. She left before either of us answered the question she first posed to me and that had sent me to the Web. We still didn't know how these warts would be treated.
      The problem—the attractive element Google offers that the other medically vetted Web sites like MEDLINE don't—is searchability. Despite having to weed through so much more irrelevant information and downright hearsay, Google allows the user a quicker route to answer a specific question without having to read a treatise.
      One of my pediatric colleagues tells a quaint story about the old days, when she knew an internist who worked as a sole practitioner on an Indian reservation. This was before the Internet and before the evidence-based medicine era, when physicians relied on their own clinical experience and that of the colleagues around them. For this physician, when a question arose in practice that did not have a ready answer, he looked up the name of the author for the appropriate section in Harrison's Principles of Internal Medicine and called him or her for a consultation. Together, the internist and the expert would discuss the situation and arrive at a plan.
      How far we've come. Or have we? Despite effortless access to so much information, we have yet to achieve a system of sharing our vast rivers of medical knowledge in a way that is efficient, specific, and reliable. Our patients, with the same ease of access, find it even harder to stay afloat.
      Until that day when MEDLINE is as searchable as Google, or Web sites with medical content are rated on their strength of evidence, I will be cautious and remind myself that searching on the Web and linking through page after page is not actually the same as the back and forth of a consultation with a colleague or expert. Unlike a computer, my colleagues and I can be asked to think beyond what we are sure about and apply our knowledge to the particular clinical scenario. We can exercise our clinical judgment, relying on facts, yes, but also on those subtle and seamless rules of biology and logic and intuition that come from knowledge and experience integrated together.
      The Internet can be like the children's game of telephone, where the flow of information is in only one direction, irrespective of its accuracy. Without questioning the source, I could find myself repeating lines I read on a Web site to my patients without being totally sure about them; my patients might repeat them onward from there, giving them a life and an authority that is undeserved. I see now that my responsibility as part of this chain is transparency—about my own uncertainty and about my sources of information. What I say to my patients needs to be true. And if it isn't, or might not be, I need to say that too. And somehow I have to find a way to communicate that, though there might be questions I can't answer, my patients are cared for with steady hands.
      I have since learned that there is controversy about the appropriate treatment for facial molluscum and that success rates are variable. Hilary's warts were treated topically with Cantharone and show early signs of clearing. More often than I'd like, I still find myself in front of a computer, facing the Google rectangle. The 6 letters in primary colors look childish, almost playful, but I am wiser now about their innocence. Before each decisive click, I hesitate and prepare myself for something unpredictable—some little bit of information that might just turn out to be more trouble than it's worth.
      The names and identifying information have been changed to preserve confidentiality.