Standards of Care

At the end of June 2019, the ‘Guide to the 2017 International Standards of Care for SMA’ for those with 5qSMA (Types 1, 2, 3 or 4) was published. This user-friendly guide summarises the key recommendations outlined in two scientific articles written by a committee of international healthcare and patient experts published in November 2017. They describe the Standards of Care (SoC) for those with 5q SMA, the most common form of SMA.

The Guide is for adults, young people and for parents and caregivers of children. The group acknowledged there were limited studies that related to adults with SMA but considered that many of the discussions and recommendations applied to best supportive care for both children and adults. The key to the most appropriate intervention and care depended critically on the child’s, young person’s or adult’s ‘functional ability’ – whether they could sit, stand or walk; whether their breathing was affected by their SMA; what other daily living activities they could manage. These SoC are therefore for all ages. 

The committee agreed there needs to be more work focusing on understanding the impact of SMA over a person’s lifetime and the implications of this for adult supportive care. There are already initiatives underway or being planned in many countries to help with this which will lead to the evolution of future SoC. For the time being, however this is the best information we can point you to.

The Guide aims to give information about what care you may expect to receive, so that you can have active discussions with your medical team about how to best manage your condition, including possible options and choices. The information and advice given isn’t intended to replace the services of your healthcare provider - you should consult your healthcare professional about all matters relating to your health.

The Guide includes these chapters:

  • Chapter 1 - Introduction    
  • Chapter 2 - Genetics and diagnosis    
  • Chapter 3 - Physiotherapy and Rehabilitation    
  • Chapter 4 - Orthopaedic Management    
  • Chapter 5 - Nutrition, Growth and Bone Health    
  • Chapter 6 - Breathing (Respiratory and Pulmonary Care)    
  • Chapter 7 - Other Organs and Systems    
  • Chapter 8 - Medication    
  • Chapter 9 - Emergency Care    
  • Chapter 10 - Anaesthetics    
  • Chapter 11 - Administration of new treatments for SMA    
  • Chapter 12 - Ethics and Choices    

You can read or download the full Guide here:

Page last updated: July 2019