Opinion
Video
The Importance of Supportive Care for Patients Living With SMA
Author(s):
Panelists discuss how supportive care for patients with spinal muscular atrophy (SMA) includes rehabilitation, respiratory care, psychosocial support, and multidisciplinary approaches to help patients achieve independence and improved quality of life.
Clinical Brief: Supportive Care Approaches for Patients With SMA
Main Discussion Topics
- Comprehensive definition of supportive care beyond motor function
- Role of physical therapy in muscle activation and functional independence
- Psychosocial support needs for older patients with SMA
- Evidence supporting exercise as a complementary therapy to disease-modifying treatments
Key Points for Physicians
- Supportive care includes rehabilitation, respiratory management, orthopedic interventions, and psychosocial support.
- Adaptive equipment can enhance independence even without complete recovery of function.
- Exercise and physical therapy appear to have complementary benefits to disease-modifying treatments.
- Current exercise recommendations lack specificity for patients with SMA regarding intensity, progression, and safety parameters.
Notable Insights
The panel emphasized that supportive care should address the patient as a whole person, facilitating independence through medical interventions and practical support for life transitions (education, employment, family planning).
Clinical Significance
Comprehensive supportive care integrated with disease-modifying therapies optimizes outcomes for patients with SMA, with emerging evidence suggesting that properly designed exercise programs may have disease-modifying effects when combined with pharmacological treatments.
