Sandra Darilek, MS,* Catherine Wicklund, MS,† Diane Novy, PhD,‡
Allison Scott, MD, § Michael Gambello, MD, PhD, *Dennis Johnston, PhD,{
and Jacqueline Hecht, PhD*
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.
Key Words: hereditary multiple exostosis, pain, exostoses, osteochondromas, support group
(JPediatrOrthop2005;25:369–376)
From*Department of Pediatrics, University of Texas-Houston Medical School, Houston,Texas; †Department of Obstetrics, Gynecology, and Reproductive Sciences, University of Texas-Houston Medical School, Houston, Texas; ‡Department of Anesthesiology, University of Texas-Houston Medical School, Houston, Texas; §Shriners Hospital for Children, Houston, Texas; and{Department of Biomathematics, University of Texas, M.D.Anderson Cancer Center, Houston, Texas.
Study conducted at the University of Texas Health Science Center, Houston, Texas.
The MHE Coalition (http://www.mhecoalition.com) provided partial funding for this study. None of the authors received any additional ?nancial support.
Reprints: Jacqueline T.Hecht,PhD, Department of Pediatrics, University of Texas-Houston Medical School, P.O.Box 20708, Houston,TX 77225-0708 (e-mail Jacqueline.t.hecht@uth.tmc.edu).
Copyright © 2005 by Lippincott Williams&Wilkins