Racial Disparities, cost of services, and socioeconomic status all impact quality of life in MD patients. Researchers believe that patients with MD may be unaware of available resources, lack knowledge of their diagnosis, have distinct cultural values, and have transportation barriers which will decrease quality of life.2
In order to increase quality of life, understanding a client’s perspective on their diagnosis and helping them access meaningful activities, supports, and overcome environmental barriers can help increase their sense of manageability over the diagnosis of MD.5,6
A pre-test post-test study was conducted to determine the effects of a rehab program to see if ADLs, coping, and QOL could be improved in patients with MD.7,8 After participating in various healthcare treatments that included medical, physical, and psychosocial programs, the intervention participants and control group showed increased dependence in ADL function overall. The control group was more dependent than the intervention group. It was believed the decreased independence was due to the progressive nature of muscular dystrophy.9
Muscular Dystrophy Association
Parent Project Muscular Dystrophy
CureDuchenne
World Duchenne Organization
MDA Care Centers
PPMD: Assembling a Care Team
PPMD: Ways to Connect
MDA: Innovations in Care
Refer to: Philips, 2020. 36
A way to connect with others
Financial support
Finding healthcare professionals
Advocating for the diagnosis
Locating other helpful resources
Understanding what DMD is
PPMD: Insurance Access & Coverage Resources
Family-to-Family Health Information Centers
Patient Advocate Foundation
Refer to: Philips, 2020.36