Managing Clinical Stability in Adults Spinal Muscular Atrophy Patients

Opinion
Video

Clinical experts in spinal muscular atrophy (SMA) address the issue of patient disengagement from healthcare services, which can occur due to a perceived lack of disease progression or stabilization, leading to undetected disease advancement and increased risk to patients, and provide recommendations for encouraging patients to re-engage with medical care.

  1. SMA is a disease that can be characterized by prolonged periods of perceived clinical stability, and although this likely does not reflect pathological stability since it feels to the patient as if nothing is happening, it can result in disengagement from healthcare. Is this something that you have encountered in your practice?
    1. How big is this danger for patients with SMA?
    2. What suggestions do you have to bring back these patients?

How do you discuss the progressive nature of SMA with your adult patients?

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