Standard of Care in SMA
SMA Europe together with Cure SMA in a collaboration is driving the revision of the 2017 standards of care.
Individuals living with SMA should receive care from a multidisciplinary care team which may include specialists in:
- neuromuscular conditions
- palliative care
- respiratory medicine
- occupational therapy
- speech & language therapy
- pain medicines
- hospital or community consultant paediatrician
Where available, a key worker should assist in the coordination of services for the family. The coordination of this multidisciplinary team is done by a specialised case/care manager. Explore the boxes below to find out more...
Specialist care teams
A neurologist is a physician specializing in neurology and trained to investigate or diagnose and treat neurological disorders, including SMA. Neurologists may also be involved in clinical research, clinical trials, and basic or translational research.
Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing the quality of life and mitigating suffering among people with serious, complex illnesses.
Respiratory medicine care / Pulmonology
Pulmonology is a medical specialty that deals with diseases involving the respiratory tract. Pulmonology is considered a branch of internal medicine, and is related to intensive care medicine.
Physiotherapy (PT), also known as physical therapy, is provided by physical therapists who promote, maintain or restore health through physical examination, diagnosis, prognosis, patient education, physical intervention, rehabilitation, disease prevention and health promotion. Physiotherapy in SMA is provided alongside with other medical services.
Occupational therapy is profession within healthcare. It is the use of assessment and intervention to develop, recover, or maintain the meaningful activities of individuals.
Speech therapists specialize in the evaluation, diagnosis, and treatment of speech and language, cognitive-communication, voice, and swallowing and impairments.
A nutritionist, dietitian is a person who advises others on matters of food and nutrition and their impacts on health. In many countries, a person can claim to be a nutritionist even without any training, education, or professional license, in contrast to a dietitian, who has a university degree, professional license, and certification for professional practice.
Psychology is Psychology includes the study of conscious and unconscious phenomena, including feelings and thoughts. It is an academic discipline of immense scope, crossing the boundaries between the natural and social sciences. Psychologists seek an understanding of the emergent properties of brains. As a social science, psychologists aim to understand the behaviour of individuals and groups.
Orthopedic surgery or orthopedics, is the branch of surgery concerned with conditions involving the musculoskeletal system.
Pain management is a branch of medicine that uses an interdisciplinary approach for easing the suffering and improving the quality of life of those living with chronic pain. The typical pain management team can include different individuals such as medical practitioners, pharmacists, clinical psychologists, physiotherapists, occupational therapists, nurses.
Orthopedic & rehabilitation technician
An orthotist is a healthcare professional who specializes in the provision of orthoses. In some countries they are clinicians trained to assess the needs of the user, prescribe treatment, determine the precise technical specifications of orthotic devices, take measurements and image of body segments, prepare model of the evaluation, fit devices and evaluate treatment outcome.
Social work is an academic discipline and practice-based profession that concerns itself with individuals, families, groups, communities, and society as a whole in an effort to meet basic needs and enhance social functioning, self-determination, collective responsibility, optimal health, and overall well-being.
Genetic counseling is the process of advising individuals and families affected by or at risk of genetic disorders to help them understand and adapt to the medical, psychological and familial implications of genetic contributions to disease; this field is considered necessary for the implementation of genomic medicine.