The International Standard of Care Committee for SMA was formed in 2005 with the goal of establishing guidelines for clinical care.
In 2007, they published the first Consensus Statement for Standard of Care in Spinal Muscular Atrophy – important guidelines which were adopted by clinicians around the world. An updated standard of care document reflecting recent advances in the understanding and treatment of spinal muscular atrophy was recently published in 2018.1,2
The current guidelines recommend that a wide-ranging team of medical experts be involved in caring for a child with spinal muscular atrophy, together with the family. This multidisciplinary care should be coordinated by one of the physicians – generally the neurologist or paediatric neurologist.1
A Guide for families on the Standards of Care for SMA can be found here.
TREAT-NMD worked with the authors of the International Consensus Statement on Care in Spinal Muscular Atrophy to create useful summary fact sheets based on the full published document. A TREAT-NMD working group is continuing to develop the standards for care on SMA in areas such as physical and occupational therapy, orthopaedics, nutrition and psychosocial implications.
The level of care may range from proactive to palliative
Refers to procedures that address both acute problems and the day-to-day management of a child’s medical needs, including but not limited to:1,2
Focuses on prevention and relief of suffering to support the best possible quality of life. This may include:3,4
The purpose of palliative care is to improve the quality of life for individuals with life-threatening illnesses, though this does not mean that they are near death. According to the World Health Organization (WHO), palliative care in children is best accomplished by a multidisciplinary team that includes the family.4
Some neuromuscular disease centres specialising in SMA may provide families with proactive and coordinated care, including:5
Collaboration and sharing of information among physicians that allows more strategic, coordinated care planning
Locations of treatment centres can vary. While some families may be fortunate to live near one, those who don’t may choose to receive regular care at a medical centre that is closer to home. Some families may also choose to build their own care team with specialists in their community.
1. Mercuri E, et al. Diagnosis and management of spinal muscular atrophy: Part 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscl Disord. 2018;28(2):103-115. 2. Finkel RS, et al. Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics. Neuromuscul Disord. 2018;28(3):197-207. 3. Blinderman CD, Billings JA. Comfort care for patients dying in the hospital. N Engl J Med. 2015;373(26):2549-2561. 4. World Health Organization. WHO definition of palliative care. Available at: http://www.who.int/cancer/palliative/definition/en/. Accessed April 28, 2016. 5. European Network for the Cure of ALS. NEuroMuscular Omnicentre (NEMO). Available at: http://www.encals.eu/center/neuromuscular-omnicentre-nemo/. Accessed April 28, 2016.