Unmet Needs of Older Patients Living With SMA

EP: 1.Describing SMA Progression Over Time

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

Clinical Brief: Addressing Distinct Needs of Older Patients With SMA

Main Discussion Topics

• Differentiation of needs between pediatric and adult patients with SMA
• Importance of realistic functional goal-setting based on patient's current capabilities
• Multifaceted challenges faced by adult patients with SMA beyond motor function
• Critical life stages and stressors that can accelerate functional decline in patients with SMA

Key Points for Physicians

• Adult patients with SMA prioritize independence, education/work capabilities, fatigue management, and prevention of further decline.
• Older patients have greater autonomy in treatment decisions and face unique challenges, including reproductive concerns.
• Crisis points (puberty, growth spurts, illness/injury, aging) require heightened vigilance as they can accelerate decline.
• Treatment expectations should be individualized through provider-patient conversations about realistic goals.

Notable Insights

Providers should recognize that adult patients may not perceive subtle year-to-year changes in function but looking back over 5- to 10-year intervals reveals disease progression that requires ongoing management.

Clinical Significance

Treatment approaches for older patients with SMA must extend beyond motor function to address independence, daily living activities, education/career participation, and reproductive concerns through individualized, patient-centered care plans.