Care Standards for SMA

Priorities

Standard of Care in SMA

Present

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 

Past

Relevant initiatives that led to the revision of the standards of care 2017:

Future

SMA Europe together with Cure SMA in a collaboration is driving the revision of the 2017 standards of care.

Priorities

Multidisciplinary Care

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 & language therapy
  • dietetics
  • psychology
  • 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...

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Specialist care teams

Neurology

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

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

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

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 therapy

Speech therapists specialize in the evaluation, diagnosis, and treatment of speech and language, cognitive-communication, voice, and swallowing and impairments.

Nutrition, dietetics

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

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.

Orthopedics

Orthopedic surgery or orthopedics, is the branch of surgery concerned with conditions involving the musculoskeletal system. 

Pain medicines

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

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

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.

Case / Care management

Medical case management is a collaborative process that facilitates recommended treatment plans to assure the appropriate medical care is provided to disabled, ill or injured individuals.