Originally appeared: August 2020 Newsletter
Experts recommend that a multidisciplinary team (MDT) approach is essential for managing the care of people with SMA. An MDT usually includes a number of medical specialists, such as:
- a neurologist
- a pulmonologist and/or respiratory therapist
- a dietician
- an orthopaedic surgeon
- a physiotherapist, and
- an occupational therapist
Because SMA is a complex disorder involving several aspects of care provided by different medical professionals, each aspect of the disorder should not be dealt with alone but as part of an MDT approach. Experts recommend that one doctor in the MDT should co-ordinate all the assessments and hospital visits. This is usually the neurologist or paediatric neurologist, as they will be aware of the course of the disorder and any possible issues the person with SMA may have. This type of approach allows the team to monitor the various aspects of the disorder that are known to be part of the progression of SMA and, when possible, provide care that can anticipate the symptoms.
There are many aspects to the care of infants or children with SMA who have substantial care needs. The level and type of care your child may need should be discussed jointly with the team. The care your child needs will depend on the symptoms of your child and may change over time. If you have any questions or concerns about the appropriate care options for your child, you should discuss these with your doctor or with the MDT.
REFERENCES:
Markowitz J, Singh P, Darras B. Spinal Muscular Atrophy: A Clinical and Research Update. Pediatr Neurol. 2012;46(1):1-12.
Mercuri E, Finkel R, Muntoni F et al. Diagnosis and management of spinal muscular atrophy: Part 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscular Disorders. 2018;28(2):103-115.
