These are the definitions of terms used in the Atlas of MS.
Advice and advocacy
A combination of individual and social actions designed to provide advice and gain political commitment, policy support, social acceptance and health systems support for people with MS.
Age of onset
Age of appearance of first symptoms.
Videos, CDs, MP3 files, tapes, etc.
Clinical prescription criteria
Specific clinical guidelines defining eligibility, including such factors as type of MS, mobility and number of relapses over specified period of time.
Community based multidisciplinary teams
Multidisciplinary teams that provide services within the physical and social environment of the person with MS, for example in their home or other community facility. Hospital-based services are excluded from this definition.
Broad set of health care practices that are not integrated into the dominant health care system. It could be a different approach than conventional medicine (alternative) or used along with conventional medicine (complementary). These could be medication or non-medication therapies. Traditional medicine is also used as a term in some countries for these therapies.
As the symptoms, signs and course of MS are diverse; diagnosis of MS is based on the identification of a clinical syndrome and its progression over time. Various diagnostic criteria have been proposed that group patients into subcategories based on the ‘certainty’ of diagnosis (Allison & Millar, Schumacher, McAlpine, Rose, Bauer, Poser, McDonald etc.)
Disease Modifying Therapies/Treatments (DMT)
Sometimes called disease modifying drugs (DMD), these treatments modify disease course by reducing frequency and severity of clinical attacks.
Benefits payable as a part of legal right from public funds in cases of MS that cause physical, mental or intellectual impairment leading to functional limitations.
Education and training
To improve the knowledge in patients, their carers, health professionals and society about MS, its consequences, and understanding of psychosocial and occupational problems to encourage them to cope actively with the disorder and live with as few limitations as possible.
Epidemiology is the study of the causes, patterns and effects of health and disease conditions in defined populations.
Relapse, an attack or a flare up. One of the most commonly used definitions of an exacerbation is the [sub]acute appearance of a neurologic abnormality that must be present for at least 24 hours in the absence of fever or infection.
For profit organization
Exists to make profits returned to its Board, staff, members or shareholders.
Personnel involved in providing care to people with MS like doctors, neurologists, nurses, social workers, physiotherapists, occupational therapists etc.
Estimated number of new cases of MS diagnosed over a defined period of time in a specified population usually given as number per 100,000 people per year.
Communication of knowledge of MS by various channels. The information could be regarding epidemiology, symptoms, prognosis, treatment options and their availability, support services, lifestyle, family issues, legislation, research etc.
People with MS have complex needs that require inputs from a variety of specialties and services. These interdisciplinary teams could be hospital or community based.
MS groups and organizations
A patient organization that works on issues related to MS in the country. It may also be called an Association, League, Federation, Foundation, Union or other appropriate title, depending upon the regulations and/or practice of the country concerned.
A neurologist whose professional interests and activities are related exclusively/specifically to the care of people with MS. He/she runs a clinic or service for MS patients separate from other neurological practice, provides overall management of care, neurologic testing and evaluation, and prescribes medications and monitors their effectiveness.
A licensed/registered nurse whose professional interests and activities are related exclusively/specifically to the care of people with MS either through direct practice, research, education, or administration.
A surveillance system that collects and maintains structured records on cases of multiple sclerosis for a specified time period and population.
People with MS have complex needs that require inputs from a variety of specialties and services. These multidisciplinary teams can be hospital or community based, and a patient does not need to meet with all multidisciplinary team members at one consultation. Some multidisciplinary teams can arrange joint consultations where all members of the team meet with the patient at the same time, though some members of the team may attend the joint consultation remotely e.g. by videoconference.
Neuromyelitis optica (NMO)
NMO, also known as Devic’s disease, is an autoimmune condition that shares many of the clinical features of MS.
No data/No data provided
No data has been provided for this category or variable by the country in the survey.
Non profit organization
An organisation that doesn’t return ‘profits’ to Board, staff, members or shareholders but ‘invests’ surplus funds back into the activities of the organization.
The individual or organization completing the survey indicated that the information requested for a particular question was not available for the country.
MS, where the patient experiences their first symptom prior to the age of 18 years, and where the patient is still under the age of 18.
Estimated total number of cases of MS at a particular point in time, in a specified population, usually given as number per 100,000 people.
Primary progressive MS
MS characterized by slowly worsening neurologic function from the beginning — with no distinct relapses or remissions. The rate of progression may vary over time, with occasional plateaus and temporary minor improvements.
Private health insurance
A premium that the health care consumer voluntarily pays to an insurance company which, in return, pays for part or all of consumers’ MS care services.
Progressive relapsing MS
MS characterised by steady worsening disease from the beginning, but with clear attacks of worsening neurologic function along the way. There may or may not be some recovery following these relapses, but the disease continues to progress without remissions.
Public sector organization
A government-owned or financed entity.
Rehabilitation is a treatment or process designed to facilitate recovery from injury, illness, or disease to as normal a condition as possible. It is a necessary component of comprehensive, quality health care for people with MS, at all stages of the disease.
Relapsing remitting MS
MS characterized by attacks of worsening neurologic function (relapses) followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Relapsing-Remitting MS may develop into secondary-progressive MS.
Services that provide people with temporary relief from tasks associated with caregiving (e.g., in-home assistance, short nursing home stays or adult day care).
Secondary progressive MS
Where the disease worsens more steadily, with or without occasional flare-ups, minor recoveries (remissions), or plateaus.
Self help/mutual support groups
Mutual support is based on the concept that people who share common experiences can provide one another with emotional support, fellowship and information. For people with MS and their families, mutual support groups offer the opportunity to exchange experiences and to give and receive support, information and encouragement.
Source(s) of information
Detailed reference of the published or unpublished data used to provide the data presented.
Sources of funding:
Out-of-pocket payments refer to payments made for MS care by the consumer or his/her family.
Insurance refers to a premium that the health care consumer voluntarily pays to a private insurance company which, in return, pays for part or all of consumers’ MS care services.
Government refers to money for health services raised by taxation, through social insurance or through compulsory/mandated health insurance.