Health-Related Quality of Life and Emotional Distress Among Mothers of Sons With Muscular Dystrophy as Compared to Sex- and Age Group–Matched Controls. (March 2021)

• Record Type: Journal Article
• Authors: Jackson, Jamie L.; Korth, Christina X.; Leslie, Carine E.; Cotto, Jennifer; Mah, May Ling; Hor, Kan; Cripe, Linda; Al-Zaidy, Samiah; Camino, Eric M.; Church, Kathleen; Lehman, Kelly J.; Shay, Victoria; Mendell, Jerry R.
• Is Part Of: Journal of child neurology. Volume 36:Number 3(2021)
• Page Start: 177
• Page End: 185
• Publication Date: 2021-03
• Subjects: quality of life -- anxiety -- depression -- muscular dystrophy -- caregiving; Nervous system -- Diseases -- Periodicals; 618.928
• DOI: 10.1177/0883073820962927
• Languages: English
• ISSNs: 0883-0738

Abstract

The health-related quality of life and emotional distress among mothers of sons with Duchenne or Becker muscular dystrophies (n = 82) were compared to sex- and age group–matched controls (n = 26). Participants self-reported health-related quality of life for themselves and their son(s), emotional distress, and mood/anxiety-related medication. Mothers reported poorer health-related quality of life across all domains of their health-related quality of life, as well as higher levels of emotional distress. Clinically elevated symptoms of anxiety were reported by 39% of mothers. Mothers' report of poorer health-related quality of life for their son(s) was a significant predictor of worse health-related quality of life and emotional distress for themselves across most domains. Additionally, older age of mothers predicted greater energy/less fatigue and lower levels of anxiety. Results highlight the need for screening emotional distress among mothers, as well as consideration for accessible interventions to improve the psychosocial functioning among these families.