Managing Clinical Stability in Adults Spinal Muscular Atrophy Patients

Author(s):

Lauren Elman, MD,Arun S. Varadhachary, MD, PhD

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.

EP: 1.Clinical Features and Phenotypes of Spinal Muscular Atrophy

EP: 2.Natural History of Spinal Muscular Atrophy

EP: 3.Presentation of Adult Spinal Muscular Atrophy in Clinics

EP: 4.Transitions of Care: Moving Spinal Muscular Atrophy Patients from Pediatric/Adolescent Care to Adult Clinics

EP: 5.Key Players in Transitioning Patients with SMA from Pediatric Care to Adult Health Care

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EP: 6.Managing Clinical Stability in Adults Spinal Muscular Atrophy Patients

EP: 7.Treatments Approved for Treatment of Spinal Muscular Atrophy

EP: 8.Factors Guiding Treatment Selection in Adult Spinal Muscular Atrophy

EP: 9.Switching Treatments in Spinal Muscular Atrophy

EP: 10.Determining Treatment Success in Spinal Muscular Atrophy

EP: 11.Counseling Patients About Treatment Outcomes in Spinal Muscular Atrophy

EP: 12.Real-World Data and Stability with Nusinersen in Adult Patients with Spinal Muscular Atrophy

EP: 13.Real-World Data for Risdiplam in Adult Patients with Spinal Muscular Atrophy

EP: 14.Transition of Care in Young Adults With Spinal Muscular Atrophy

EP: 15.Recommendations for Clinicians Taking Care of Patients with SMA

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?