Since The TMJ Association began in 1986, we have been privy to TMJ experiences. We’ve heard from patients and family members here and abroad via phone, fax, mail, and email--all sharing stories of pain and problems with speaking, chewing, swallowing, and even kissing loved ones.
There were grim stories about trying to find an understanding practitioner, the cost of care, the lack of insurance and even worse—accounts of failed treatments. You’ve shared ideas for coping and alleviating pain. Other times, you described additional health problems that seemed to develop along with the Temporomandibular Disorder (TMD).
Because of your input, the TMJA has been able to gather a wealth of information about TMD in all their complexity. Not surprisingly, it occurred to us that there should be a way to organize this information in such a way as to provide patients, providers, and scientists with a fuller understanding of these conditions - who experiences them, and the treatments being recommended to TMJ patients and whether these treatments help them.
Thus was born the idea of a major survey to be designed, conducted, and analyzed by outside experts whose participation would lend credibility to the survey. With headquarters in Milwaukee and access to the Medical College of Wisconsin (MCW), the TMJA contacted four MCW professors who rose to the challenge: Raymond Hoffman, PhD, is a biostatistician and Associate Director of Quantitative Health Sciences in MCW’s Department of Pediatrics, Jane Morley Kotchen, MD, MPH, Director and Professor in the Master in Public Health Program of the Institute for Health and Society, Theodore Kotchen, MD, Professor of Medicine and Associate dean for Clinical Research, in the Department of Medicine Division of Endocrinology, Metabolism, and Clinical Nutrition, and Allen W. Cowley, Jr., Ph.D., Director of the Cardiovascular Center & Chairman of the Department of Physiology.
Together, the team, working with TMJA, drafted an extensive questionnaire demographic information (age, sex, marital status), reproductive history, family history of TMD, age at which the symptoms first occurred and age of diagnosis, respondent’s concepts about causes of symptoms, procedures related to TMD, and selected medications. We also wanted to identify the spectrum of clinical manifestations and therapeutic strategies associated with TMD from the perspective of the affected individuals, and to compare the prevalence of comorbid conditions and symptoms in affected individuals to a comparable group of unaffected individuals similar in age and sex.
Review and approval of the survey and protocol by MCW’s Institutional Review Board (mandated to protect the rights of human subjects) took several months, but in due course the invitation to participate was electronically mailed to 10,000 TMJA registrants. A little over one-third of the registrants actually received the invitation and 43 percent responded, for a total of 1,511 respondents, 1,358 women and 153 men. Our thanks go to the survey participants and scientists who made this possible. Results of the survey were published in the Clinical Journal of Pain, Volume 27, Number 3, March/April 2011, pp. 268-274.
Dr. Jane Kotchen, a co-author of the survey presented the findings at the TMJA's Fourth Scientific Meeting. Click here to view the PowerPoint presentation.