Selected clinical and demographic factors and all-cause mortality among individuals with Duchenne muscular dystrophy in the Muscular Dystrophy Surveillance, Tracking, and Research Network

Details

• Alternative Title:
  Neuromuscul Disord
• Personal Author:
  Paramsothy, Pangaja ; Wang, Yinding ; Cai, Bo ; Conway, Kristin M. ; Johnson, Nicholas E. ; Pandya, Shree ; Ciafaloni, Emma ; Mathews, Katherine D. ; Romitti, Paul A. ; Howard, James F. ; Riley, Catharine
• Description:
  Population-based estimates of survival among individuals with Duchenne muscular dystrophy (DMD) living in the United States are lacking. It is also unclear whether the association between glucocorticoid use and all-cause mortality persists in the context of other common treatments (cardiac medication, cough-assist, bilevel positive airway pressure, and scoliosis surgery) observed to delay mortality. Among 526 individuals identified by the Muscular Dystrophy Surveillance, Tracking, and Research Network, the estimated median survival time from birth was 23.7 years. Current glucocorticoid users had a lower hazard of mortality than non-users. Individuals who ever had scoliosis surgery had a lower hazard of mortality than individuals who did not have scoliosis surgery. Individuals who ever used cough assist had a lower hazard of mortality than individuals who never used cough assist. Non-Hispanic Black individuals had a higher hazard of mortality than non-Hispanic White individuals. No differences in hazards of mortality were observed between ever versus never use of cardiac medication and ever versus never use of bilevel positive airway pressure. The glucocorticoid observation is consistent with the 2018 Care Considerations statement that glucocorticoid use continues in the non-ambulatory phase. Our observations may inform the clinical care of individuals living with DMD.
• Subjects:
  Cough Demography Glucocorticoids Humans Muscular Dystrophy, Duchenne Scoliosis
• Source:
  Neuromuscul Disord. 32(6):468-476
• Pubmed ID:
  35597713
• Pubmed Central ID:
  PMC9214635
• Document Type:
  Journal Article
• Funding:
  U01DD001245/ACL/ACL HHSUnited States/ ; U01 DD000187/DD/NCBDD CDC HHSUnited States/ ; R01 NS104010/NS/NINDS NIH HHSUnited States/ ; U01 DD001245/DD/NCBDD CDC HHSUnited States/ ; U54 NS053672/NS/NINDS NIH HHSUnited States/ ; U01 DD000189/DD/NCBDD CDC HHSUnited States/ ; U24 NS107181/NS/NINDS NIH HHSUnited States/ ; R01 FD006071/FD/FDA HHSUnited States/ ; U01 DD000191/DD/NCBDD CDC HHSUnited States/ ; U01 DD001248/DD/NCBDD CDC HHSUnited States/ ; U01 DD001252/DD/NCBDD CDC HHSUnited States/ ; R21 TR003184/TR/NCATS NIH HHSUnited States/ ; U01DD001248/ACL/ACL HHSUnited States/ ; U01 DD001242/DD/NCBDD CDC HHSUnited States/ ; U01 DD001247/DD/NCBDD CDC HHSUnited States/ ; U01DD001252/ACL/ACL HHSUnited States/ ; U01DD001242/ACL/ACL HHSUnited States/ ; U01DD001255/ACL/ACL HHSUnited States/ ; CC999999/ImCDC/Intramural CDC HHSUnited States/ ; U01 DD001255/DD/NCBDD CDC HHSUnited States/ ; U01 DD000190/DD/NCBDD CDC HHSUnited States/
• Place as Subject:
  United States
• Volume:
  32
• Issue:
  6
• Collection(s):
  CDC Public Access
• Main Document Checksum:
  urn:sha256:d1e5241f8197279b14c9e3985b95ed14512b79f0fe14e82ef599af0f7d4ab9c3
• Download URL:
  https://stacks.cdc.gov/view/cdc/119297/cdc_119297_DS1.pdf
• File Type:
  [PDF - 683.79 KB ]