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.