Standards of care in SMA
- Care Standards for SMA Individuals living with SMA should receive care from a multidisciplinary care team which may include specialists in neuromuscular conditions, palliative care, respiratory medicine, physiotherapy, occupational therapy, speech and language therapy, dietetics, psychologists, pain specialists and a hospital or community consultant paediatrician. Where available, a key worker should assist in the co-ordination of services for the family.
Revised standards of care were published in 2017. Coordinated by Treat-NMD, SMA Europe has worked with members of other organisations, on a version for families.
"Whether or not someone is receiving drug treatment,
getting good supportive care right – including symptom
management, mental and social well-being - is key to
achieving the best possible quality of life."
Guide to the 2017 International Standards of Care for SMA
SMA Europe in the SMA care landscape
- We are actively working with all stakeholders to accelerate progress in the SMA care landscape and to improve access to care for all patients in Europe.
- We have initiated the OdySMA project – With OdySMA, we want to mobilise the community to highlight challenges in access to medicines and care; to ensure no one is left behind. With our atlas we highlight based on evidence gaps and challenges across Europe.
- We have initiated studies that combine the daily living with care experiences to unravel gaps and hurdles so that in future the voice of individuals living with SMA will be an integral part when it comes to develop Care Guidelines for SMA.
- We are collaborating with Cure SMA to revise the current standards of therapies and care and to disseminate evidence around care across the community and health care professionals.
- We have co-authored many articles related to SMA care.
Future care landscape
By elevating the voice of the community we aim to influence decision-making towards patient-relevant care approaches. And we want to impact the future today. We are committed to understanding open issues and challenges, and opening up new areas for SMA; for example:
- Adaptation of SMA Care to the new therapeutic situation and its impact on patients
- Integration of new technologies and innovations into the care landscape; such as health-apps, robotics and artificial intelligence.