The changing SMA landscape

After patients are treated, health professionals who care for patients with SMA have a role to play. Learn from SMA experts about ongoing care and the future of SMA after treatment.

The impact of immediate referral and treatment 

If you suspect or recognize the signs of SMA, it is essential you refer your patient to a relevant specialist who can promptly diagnose and treat SMA. Early action helps prevent permanent motor neuron loss. Due to the progressive nature of SMA, patients who are treated earlier often see better outcomes.3

Pediatric healthcare professionals, physical therapists, pulmonologists, and genetic counselors are among those who may encounter an undiagnosed patient with SMA in their practice.4,5

Suspicion of SMA should trigger immediate action. Flag your referral for urgent consultation.

Unsure where to go? 

Ongoing care requires a multidisciplinary care team 

Even after disease-modifying treatment, patients with SMA may need respiratory, nutritional, and musculoskeletal support. The team will vary from patient to patient, but a coordinated team of specialists can help monitor the patient’s SMA.4,5

It is recommended that a neurological expert, such as a pediatric neurologist or neuromuscular specialist, coordinate the care of the patient, as they will likely have the most experience with anticipating needs.4

While the specific needs and support levels of patients differ, part of the ongoing care can include an assessment of motor function, which may include regular sessions with a physical therapist and possible use of braces. Additionally, nutritionists can be involved to monitor weight and nutrient intake, paying careful attention to calcium and vitamin D for bone health.4

Multidisciplinary care team for patients with SMA includes neuromuscular specialists, respiratory, musculoskeletal, nutritional, and physical and occupational

References: 1. Lin CW, Kalb SJ, Yeh WS. Delay in diagnosis of spinal muscular atrophy: a systematic literature review. Pediatr Neurol. 2015;53(4):293-300. 2. Schorling DC, Pechmann A, Kirschner J. Advances in treatment of spinal muscular atrophy—new phenotypes, new challenges, new implications for care. J Neuromuscul Dis. 2020;7(1):1-13. 3. Glascock J, Sampson J, Haidet-Phillips A, et al. Treatment algorithm for infants diagnosed with spinal muscular atrophy through newborn screening. J Neuromuscul Dis. 2018;5(2):145-158. 4. Mercuri E, Finkel RS, Muntoni F, et al. Diagnosis and management of spinal muscular atrophy: part 1: recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscul Disord. 2018;28(2):103-115. 5. Wang CH, Finkel RS, Bertini ES, et al; Participants of the International Conference on SMA Standard of Care. Consensus statement for standard of care in spinal muscular atrophy. J Child Neurol. 2007;22(8):1027-1049. 

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