Prescription pain medication for people with selected muscular dystrophies in the Muscular Dystrophy Surveillance, Tracking, and Research Network



Poster Number: 111


Jonathan Suhl, The University of Iowa, Katherine Mathews, MD, University of Iowa, Kristin Conway, PhD, Sonja Rasmussen, Chip Howard, MD, Jen Andrews, Shiny Thomas, Nicholas Johnson, MD, Virginia Commonwealth University, Joyce Alese, Paul Romitti, MS, PhD, University of Iowa

Background: Pain is a recognized symptom of muscular dystrophy (MD), but little is known about prescription medication use for MD-related pain management. Using population-based surveillance data, we examined pain medications (opioid/non-opioid) prescribed among individuals with selected MDs.

Methods: Prescription data were abstracted from medical records for individuals with Duchenne/Becker MD (DBMD) during 2000-2015 and facioscapulohumeral (FSHD), limb-girdle (LGMD), and myotonic (DM) MDs during 2008-2016, identified by the MD Surveillance, Tracking, and Research Network (MD STARnet). Percentages of individuals prescribed pain medications for ≥6 weeks (any, any opioid, and medication class) at any time during follow-up abstracted were estimated for all MDs and by MD type, sex, MD STARnet site, and age at final visit.

Results: Approximately 25% of 1,282 individuals were prescribed pain medication; the most common class was opioids (48% of any pain medication). Percentage taking any prescribed pain medications varied across MD types, with the lowest (5%) for DBMD and similar percentages (31-38%) for DM, FSHD, and LGMD. Similar patterns were observed for opioids (DBMD: 2%; DM/FSHD/LGMD: 15-22%). Among non-DBMD types, similar percentages of males and females were prescribed any pain medication (33% and 37%, respectively) or an opioid (15% and 20%, respectively). Observed variability across MD STARnet sites (any: 16%-34%; opioids: 8-18%) may be due to differences in patient characteristics. Pain medications were prescribed at a lower rate in children than adults; at last visit abstracted, 4% of those aged <20yr and 31% of those ≥20yr were prescribed pain medications (opioids, 1% and 8%, respectively).

Discussion: Pain medications prescribed for ≥6 weeks were documented for nearly one-quarter of individuals with MD; about half were opioids. These data highlight that use of medications for pain management is a frequent component of MD care. Understanding modifiable factors associated with MD-related pain and effective interventions may help improve care.