“Caveat emptor,” Latin for buyer beware, should be your watchword if you are a TMD patient seeking information or advice through Internet forums. That is the conclusion drawn from an interesting study conducted by two Swiss investigators, Drs. Jens Türp and Harald Ohla. They entered the search term “TMJ pain forum” into Google and explored the first 20 online German-language discussion forums that came up. Their research analyzed 28 “threads,” which included an original post to the site and a sequence of responses given by other users which created a discussion. Out of the 28 individuals who started the threads, fifteen were women, 2 were men, while 11 could not be identified by gender. In general, the original posts asked for help dealing with symptoms. Pain was mentioned in 23 out of the 28 posts, and impaired jaw movements in 13. Some questioned their diagnosis. Others wanted advice on finding a provider. Some 40 percent criticized previous therapies and 3 out of 4 expressed feelings of insecurity, irritation and disappointment.
These initial queries elicited 189 responses/comments. Responders often recommended seeing a professional (not necessarily a physician or a dentist) or said that oral splints had been useful. Less reliable responses concerned etiologies (causes) and prognoses (outcomes). One dentist even went so far as to predict that the patient would be severely deformed if left untreated. The authors observed that online forums can be useful in that they allow patients to provide a freer and more extended description of medical history that, although pertinent, may not be possible under the time-constraints typical of a patient-provider interaction. They also noted that TMD patients’ description of their pain used words rarely found in standard German pain questionnaires suggesting that revisions to those questionnaires are in order.
The conclusion of the study was as follows:
“Internet posts in online discussion forums, in which patients with TMJ request information, are important sources of knowledge, because they reflect the feelings, concerns, and interpretations of those affected in an unadulterated form. Users participating in the ensuing discussion threads may be expected to offer not only empathy but also concrete proposals for further action. However, the recommendations made are not always reliable. Statements on the etiology and prognosis of the disorder are highly problematic, as they embody concepts that reinforce fear and contribute to a chronic outlook. It would therefore be highly desirable for professional societies or organizations to offer high-quality patient information on the web. This information should be regularly updated to reflect the current therapies available.” *
The TMJ Association has asked Dr. Türp to review the content of its website. We look forward to receiving the results of his evaluation.