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 Consensus Statement for Standard of Care in Spinal Muscular Atrophy, addressing common medical problems, diagnostic strategy, recommendations for assessment and monitoring, and therapeutic intervention in each care area.

The guidelines recommend that a wide-ranging team of medical experts be assembled as soon as possible. A care plan should include referrals to the medical experts who will direct care for the individual with SMA. Often the first referral will be to a neuromuscular clinic.

An update to the Standard of Care document reflecting advances in the treatment of SMA became available in late 2017.

The level of care may range from comprehensive to palliative

COMPREHENSIVE CARE

Refers to procedures that address both acute problems and the day-to-day management of the individual’s medical needs, including but not limited to:

  • Airway clearance, cough, and secretion management
  • Ventilator support
  • Nutrition and hydration
  • Physiotherapy, to build or maintain physical function

PALLIATIVE CARE

Focuses on prevention and relief of suffering to support the best possible quality of life. This may include:

  • Managing discomfort and preventing unnecessary interventions
  • Potentially life-sustaining measures with regard to the individual and his or her family
  • Psychosocial and spiritual support to the individual and/or his or her family
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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.

SMA clinics

Neuromuscular clinics specialising in SMA can provide proactive and coordinated care, including:

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Centralised appointments that enable individuals with SMA to see all necessary specialists in a single visit

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Assistance for those who need to travel significant distances (parking, meals, lodging, etc.)

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Collaboration and sharing of information among physicians that allows more strategic, coordinated care planning

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Locations of treatment clinics can vary. While some people 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, or build their own care team with specialists in their community.