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For Healthcare Professionals
 

Why ALSFRS-R Matters

A reduction in a patient’s ALSFRS-R score indicates a decline in physical function. Understanding this relationship is important, as it may correlate with quality of life and survival.1,2
 
why ALSFRS-R matters

Why ALSFRS-R Matters

A reduction in a patient’s ALSFRS-R score indicates a decline in physical function. Understanding this relationship is important, as it may correlate with quality of life and survival.1,2
why ALSFRS-R matters
Significance of
Every Point
 

Preserving Every Point Is Crucial

Depending on the domain or domains affected, a small change (1-2 points) in ALSFRS-R score can indicate a significant reduction of function.1

Rate of Progression3

The ALSFRS-R score consistently declines with disease progression at a rate generally consistent across multiple ALS clinical trials.
ALS progression timeline
On average, in ALS clinical trials, there is approximately a one point drop every month.
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Function and
Quality of Life
 

The Impact of ALSFRS-R Score on QoL1,4

Studies demonstrate a correlation between ALSFRS-R and several quality of life measures and may provide insight into patients' overall health and well-being.

Functional Decline Affects Mental Health

Advanced physical impairment (as measured by the ALSFRS-R) correlates with increasing depression in the ALS population. In one study, over 55% of ALS patients experienced mild to severe depression, based on the Beck Depression Inventory (BDI).
The level of depression among ALS patients significantly correlated with several quality of life metrics, including general health, vitality, mental health, and social and emotional well-being.

The Continued Loss of Independence1

Even a small drop in a patient’s ALSFRS-R can significantly inhibit functional abilities.

For example, based on the ALSFRS-R scale, a decline of ONLY 2 POINTS in a patient’s ability to swallow can mean the difference between maintaining self-sufficiency in consuming food and relying on medical intervention and the assistance of a caregiver.
 
ALSFRS-R ability to swallow score 4
Normal eating habits
 
 
ALSFRS-R eating problems score 3
Early eating problems — occasional choking
 
 
ALSFRS-R soft foods score 2
Dietary consistency changes
 
 
ALSFRS-R tube feeding score 1
Needs supplemental tube feeding
 
 
ALSFRS-R parenteral feeding score 0
NPO (exclusively parenteral or enteral feeding)
 
It's important to understand the ALSFRS-R scale because each point can make a difference to patients with ALS.
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Function and
Survival
 

ALSFRS-R Correlates With Survival Time

The ALSFRS-R is shown to be a predictor of survival time in ALS patients.2

The speed at which ALS progresses, measured by the rate of decline in a patient’s ALSFRS-R score over time, can be used to confidently predict disease prognosis.
ALSFRS-R predicts ALS survival time
A single point drop in ALSFRS-R equates to a 7% increase in risk of death or tracheostomy5
Slowing the decline in ALSFRS-R by 16.5% is equal to a prolongation of 4-5 months’ median survival.6
The ALSFRS-R possesses more predictive power of survival than measurements of muscle strength testing and respiratory function.3
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NEXT: MANAGING ALS
References: 1. Cedarbaum JM, Stambler N, Malta E, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. J Neurol Sci. 1999;169(1-2):13-21. 2. Beghi E, Mennini T, Bendotti C, et al. The heterogeneity of amyotrophic lateral sclerosis: a possible explanation of treatment failure. Curr Med Chem. 2007;14(30):3185-3200. 3. Castrillo-Viguera C, Grasso DL, Simpson E, et al. Clinical significance in the change of decline in ALSFRS-R. Amyotroph Lateral Scler. 2010;11(1-2):178-180. 4. Körner S, Kollewe K, Abdulla S, et al. Interaction of physical function, quality of life and depression in amyotrophic lateral sclerosis: characterization of a large patient cohort. BMC Neurol. 2015;15:84. 5. Kaufmann P, Levy G, Thompson JL, et al. The ALSFRSr predicts survival time in an ALS clinic population. Neurology. 2005;64(1):38-43. 6. Leigh PN, Swash M, Iwasaki Y, et al. Amyotrophic lateral sclerosis: a consensus viewpoint on designing and implementing a clinical trial. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004;5(2):84-98.