Expanded Disability Status Scale (EDSS)

The Expanded Disability Status Scale (EDSS) is a method of quantifying disability in multiple sclerosis and monitoring changes in the level of disability over time. It is widely used in clinical trials and in the assessment of people with MS.

The scale was developed by a neurologist called John Kurtzke in 1983 as an advance from his previous 10 step Disability Status Scale (DSS).

The EDSS scale ranges from 0 to 10 in 0.5 unit increments that represent higher levels of disability. Scoring is based on an examination by a neurologist.

EDSS steps 1.0 to 4.5 refer to people with MS who are able to walk without any aid and is based on measures of impairment in eight functional systems (FS):

pyramidal – muscle weakness or difficulty moving limbs
cerebellar – ataxia, loss of balance, coordination or tremor
brainstem – problems with speech, swallowing and nystagmus
sensory – numbness or loss of sensations
bowel and bladder function
visual function - problems with sight
cerebral functions - problems with thinking and memory
other

A functional system (FS) represents a network of neurons in the brain with responsibility for particular tasks. Each FS is scored on a scale of 0 (no disability) to 5 or 6 (more severe disability).

EDSS steps 5.0 to 9.5 are defined by the impairment to walking. The scale is sometimes criticised for its reliance on walking as the main measure of disability.

Although the scale takes account of the disability associated with advanced MS, most people will never reach these scores. A large study that looked at people with MS at a clinic in Ontario (prior to the development of the expanded version) found that 51% of people had a DSS score of 5 or lower. 88% had a score of 7 or lower.

Expanded Disability Status Scale (EDSS)

Score	Description
0	Normal neurological exam, no disability in any FS
1.0	No disability, minimal signs in one FS
1.5	No disability, minimal signs in more than one FS
2.0	Minimal disability in one FS
2.5	Mild disability in one FS or minimal disability in two FS
3.0	Moderate disability in one FS, or mild disability in three or four FS. No impairment to walking
3.5	Moderate disability in one FS and more than minimal disability in several others. No impairment to walking
4.0	Significant disability but self-sufficient and up and about some 12 hours a day. Able to walk without aid or rest for 500m
4.5	Significant disability but up and about much of the day, able to work a full day, may otherwise have some limitation of full activity or require minimal assistance. Able to walk without aid or rest for 300m
5.0	Disability severe enough to impair full daily activities and ability to work a full day without special provisions. Able to walk without aid or rest for 200m
5.5	Disability severe enough to preclude full daily activities. Able to walk without aid or rest for 100m
6.0	Requires a walking aid – cane, crutch, etc. – to walk about 100m with or without resting
6.5	Requires two walking aids – pair of canes, crutches, etc. – to walk about 20m without resting
7.0	Unable to walk beyond approximately 5m even with aid. Essentially restricted to wheelchair; though wheels self in standard wheelchair and transfers alone. Up and about in wheelchair some 12 hours a day
7.5	Unable to take more than a few steps. Restricted to wheelchair and may need aid in transfering. Can wheel self but cannot carry on in standard wheelchair for a full day and may require a motorised wheelchair
8.0	Essentially restricted to bed or chair or pushed in wheelchair. May be out of bed itself much of the day. Retains many self-care functions. Generally has effective use of arms
8.5	Essentially restricted to bed much of day. Has some effective use of arms retains some self-care functions
9.0	Confined to bed. Can still communicate and eat
9.5	Confined to bed and totally dependent. Unable to communicate effectively or eat/swallow
10.0	Death due to MS

Limitations of the EDSS

Despite being the most widely used outcome measure for disability progression in MS, the EDSS has been criticised for having some limitations. For instance, EDSS scores can vary due to the complex scoring rules and the subjective nature of the neurological examination. Some argue that the changes between steps on the scale (e.g. 1.0 to 2.0 and 4.0 to 5.0) are unequal and that from 4.0 upwards the scale focuses too much on walking ability, and underestimates how important upper body function is in self-care and independence. It's also been highlighted that some functional areas are not sufficiently assessed, such as cognitive function, mood, energy levels and quality of life.

References

Kurtzke JF. Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology 1983;33(11):1444-1452. Summary
Weinshenker BG, et al. The natural history of multiple sclerosis: a geographically based study. 1 Clinical course and disability. Brain 1989;112:133-146. Summary
van Munster CEP, et al. Outcome measures in clinical trials for multiple sclerosis. CNS Drugs 2017;31(3):217-236. Full article