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. An updated standard of care document reflecting advances in the treatment of spinal muscular atrophy is currently in development.
The current 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.
The level of care may range from comprehensive to palliative
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:
Focuses on prevention and relief of suffering to support the best possible quality of life. This may include:
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.
Neuromuscular disease centers specializing in SMA can provide proactive and coordinated care, including:
Centralized appointments that enable individuals with SMA to see all necessary specialists in a single visit
Collaboration and sharing of information among physicians that allows more strategic, coordinated care planning
Locations of treatment centers 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 center that is closer to home, or build their own care team with specialists in their community.