The Importance of Supportive Care for Patients Living With SMA

EP: 1.Describing SMA Progression Over Time

EP: 2.Unmet Needs of Older Patients Living With SMA

EP: 3.Examining the Importance of Early Treatment for SMA

EP: 4.Key Functional Milestones Affected by Disease Progression

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EP: 5.The Importance of Supportive Care for Patients Living With SMA

EP: 6.Introduction to Therapies Used to Treat SMA

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.