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

PROACTIVE CARE

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

  • Airway clearance, cough, and secretion management
  • Ventilator support (invasive or noninvasive)
  • Nutrition and hydration
  • Physical therapy, stretching and positioning
  • Orthopaedic care to promote growth and bone health
  • Acute care when a child is sick or needs to go into hospital
  • Treatment with new medicines approved for spinal muscular atrophy

PALLIATIVE CARE

Focuses on prevention and relief of suffering to support the best possible quality of life. This may include:3,4

  • 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
Spinal Muscular Atrophy Palliative Care

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

SMA centres

Some neuromuscular disease centres specialising in SMA may provide families with proactive and coordinated care, including:5

Spinal Muscular Atrophy Treatment Appointment

Centralised appointments that enable families to see all necessary specialists in a single visit

Spinal Muscular Atrophy Treatment Travel

Assistance for families that need to travel significant distances (parking, meals, lodging, etc.)

SMA Symptoms

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

Spinal Muscular Atrophy Treatment Centers

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.