Highly publicized reports of unproven or controversial medical practices for chronic conditions present a growing challenge for patients, healthcare providers, and administrators—especially when the condition is chronic and debilitating. How can we temper patients’ zeal for experimental therapies and unhealthy practices, now widely and effectively marketed through social media and patient testimonials, even when the evidence shows that the treatments are likely to do more harm than good?
Two practices come to mind. The first is “liberation therapy,” touted as an endovascular surgical procedure that improves outcomes in patients with multiple sclerosis (MS) by opening blockages in veins that drain blood from the brain. But despite the fact that virtually no high-quality evidence suggests that this procedure improves clinical outcomes, approximately 30,000 MS patients worldwide have undergone the procedure—with the vast majority of these procedures done on a fee-for-service basis, and not as part of clinical trials. And despite ongoing evidence that there is no link between early childhood vaccination and the development of autism, nearly 1 in 10 parents refuse or delay vaccinations because they believe it is safer than following the Centers for Disease Control and Prevention (CDC) vaccination schedule.
Case in point: In April 2013, researchers from the University of Buffalo presented the results from the PREMiSe trial at the annual meeting of the American Academy of Neurology. PREMiSe was a very small, randomized, double-blind study testing the safety and efficacy of “liberation therapy” on the symptoms and progression of MS. The data suggested that the therapy did not provide sustained improvement in clinical symptoms, brain lesions, or quality of life—a triad of findings that surprised even the researchers!
The researchers were particularly concerned to find increased disease activity in those who underwent the procedure. They were so surprised and concerned about their findings that they issued a press release—and in a very unusual fashion—also posted a YouTube video. Both vehicles contained a primary message to people with MS and their healthcare providers that while endovascular treatment for chronic cerebrospinal venous insufficiency (CCCSVI) might eventually show some promise, for now, the procedure should be done only in the context of randomized, double-blind, controlled studies like PREMiSe.
I watched the YouTube video, which had already received well over 1300 hits in the 3 weeks it had been posted. The information presented by the researchers themselves was clear, instructional, and unbiased. However, the viewers wanted no part of it. The comments posted were all from patients with advancing MS, and all but one lambasted the researchers for their findings. I was disheartened, although I recognize that there is probably a self-selection bias among people who leave negative comments in an online forum.
As advocates of evidence-based medicine, it’s our mission to provide patients and providers with the best possible evidence that we can. But sometimes even the best evidence can’t trump hope. Maybe the best we can do is to experiment with ways to promote best practices by offering up the evidence in a way that “speaks to” an individual’s health beliefs, values, and behaviors?