We are very excited to report that the study, Hereditary Multiple Exostosis and Pain, has been published in the Journal of Pediatric Orthopaedics, Volume 25, Number 3, May/June 2005, pps 369-376. Its publication in such a well-respected journal ensures that many orthopaedic surgeons throughout the country will now be made aware of the importance of treating pain in MHE patients.
Hereditary Multiple Exostosis and Pain
Sandra Darilek, MS, Catherine Wicklund, MS Diane Novy, PhD, Allison Scott, MD,
Michael Gambello, MD, PhD, and Jacqueline Hecht, PhD
Abstract: This study was undertaken to characterize pain in individuals with hereditary multiple exostosis (HME). Two hundred ninety-three patients with HME completed a questionnaire designed to assess pain as well as its impact on their life. Eighty-four percent of participants reported having pain, indicating that pain is a real problem in HME. Of those with pain, 55.1% had generalized pain. Two factors were found to be associated with pain outcome: HME-related complications and surgery. Individuals who had HME-related complications were five times more likely to have pain, while those who had surgery were 3.8 more likely to have pain. No differences were found between males and females with respect to pain, surgery, or HME-related complications. The results of this study indicate that the number of individuals with HME who have pain has been underestimated and that pain is a problem that must be addressed when caring for individuals with HME.
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Background: In her role as National Director and Coordinator of Research for The MHE Coalition, Sarah Ziegler informs the scientific and medical community about issues affecting our membership. Sarah raised the issue of chronic pain to Jacqueline T. Hecht, Ph.D., of the Department of Pediatrics, University of Texas-Houston Medical School. Pain is something that many of those reading this newsletter know too much about, having suffered for far too long. However, many of our members, when trying to get treatment, have been told by doctors that MHE does not cause pain. Much of the older medical literature describes exostoses as “painless,” not taking into account the havoc that these tumors wreak on adjacent soft tissues and nerves. As there was little information in the current literature concerning pain in individuals with MHE, Dr. Hecht became interested in the subject and agreed to do a questionnaire study on the overall severity and effects of pain on individuals with this disorder. Dr. Hecht and a team of researchers designed a questionnaire. The MHE Coalition partially funded the study, and on August 15, 2002 we mailed out questionnaires to 700 of our members who had MHE. Fifty-five questionnaires were sent to patients through Shriners Hospital for Children. 255 of those who received the questionnaire through The MHE Coalition actually filled it out and sent it back. While we had hoped for a much better response, fortunately Dr. Hecht and her team were able to use the data they did receive, together with that received from the Shriners participants, to confirm that MHE does cause pain. Our thanks to everyone who took the time to fill out and mail back a questionnaire. You have made a difference!
The pain study demonstrates how important your support and contributions are! Without the questions and shared experiences of people in the MHE support groups, researchers would not be aware of some of the issues involved. Without your donations, we could not have helped fund this and other studies. Without your participation, the information would not be there to analyze. When we say that each of you makes a difference, we mean it! Please continue to support The MHE Coalition – both financially and with your participation.
For information on how to obtain a copy of the full text of this article, please contact Susan Wynn at mheandme@yahoo.com, 14 Stony Brook Drive, Pine Island, NY 10969, 845-258-6058.
