Monitoring ALS Function With the ALSFRS-R
Frequently monitoring your decline in function is important to understanding how amyotrophic lateral sclerosis (ALS) is affecting your body and the importance of early treatment. The most widely used test in clinical trials to track ALS is called the ALS Functional Rating Scale-Revised (ALSFRS-R). Tracking your ALSFRS-R score can help you better prepare for the road ahead.1
What is the ALSFRS-R?
ALS clinical studies use a tool called the ALSFRS-R to track how ALS is progressing. It uses points to measure changes in a person's ability to do activities including but not limited to2:
- Speaking
- Cutting and eating food
- Climbing stairs
- Breathing without help
Your healthcare provider may or may not use the ALSFRS-R with you, but it is sometimes needed for insurance coverage purposes.
In total, a person can have 48 points on the ALSFRS-R. On average, someone with ALS may lose about 1 point per month.2,3
How does the ALSFRS-R work?2,4
The ALSFRS-R measures 12 aspects of physical function, ranging from one’s ability to swallow and use utensils to climbing stairs and breathing. Each function is scored from 4 (normal) to 0 (no ability), with a maximum total score of 48 and a minimum total score of 0.
Bulbar
- Speech
- Salivation
- Swallowing
Fine Motor
- Handwriting
- Cutting food
- Dressing and hygiene
Gross Motor
- Turning in bed
- Walking
- Climbing stairs
Respiratory
- Difficulty breathing or shortness of breath (dyspnea)
- Trouble breathing when lying down (orthopnea)
- Respiratory insufficiency
Patients with higher scores across the 12 domains have more physical function.
How is the ALSFRS-R administered?1,4
The ALSFRS-R is administered by a healthcare provider. The test is quick and easy to perform. The questionnaire can be completed over the telephone or online, so you can still easily monitor ALS even if you have difficulty returning to the clinic for an evaluation.
Talk with your healthcare provider(s) about the ALSFRS-R scale and why it's important.
What does an ALSFRS-R score mean?
Remember, the higher your ALSFRS-R score, the more physical function you retain.
Quality of life
There is a strong connection between your physical function and quality of life. Generally, the better you can move and the longer you can preserve physical function, the more independence you can maintain over everyday activities.2
What could point loss mean for your independence?
Losing just 1 point could be the difference between2:
Eating on your own
Needing help being fed
Getting tired walking up the stairs
Having someone to help you
Having some trouble getting dressed
Needing help or using adaptive clothing
How unique is an ALSFRS-R score?5
No 2 people with ALS are alike, meaning every ALSFRS-R score is completely personal and unique.
In fact, even if 2 people have the exact same score, they could still be experiencing drastically different symptoms. This is because symptoms affect different regions of the body and can vary from person to person.
For example, both Steven and Mary have the same ALSFRS-R score; however, while Steven experiences symptoms in his head, throat, and upper body, Mary experiences symptoms in her legs and respiratory system.*†
People may experience loss of physical function differently
Steven (ALSFRS score = 40)
breath while lying down)4
Mary (ALSFRS score = 40)
breath while lying down)3
*Steven and Mary are hypothetical patients.
†Remember each function is scored from 4 (normal) to 0 (no ability), with a maximum total score of 48 and a minimal total score of 0.
Use the ALSFRS-R input tool
Choose the answer that best describes your ability to perform each activity
Remember, your ALSFRS-R score will change over time. Retaking the questionnaire can help ensure the information stays relevant as symptoms progress. Your healthcare provider is the best source of information regarding your health.
Tip: It can be helpful to fill out the Input Tool with your caregiver or healthcare provider(s). They may have a unique perspective on how you’re able to complete daily functions.
How important is it to discuss the ALSFRS-R with a healthcare provider?
It can't be overemphasized how important it is to speak regularly with your healthcare provider about your ALSFRS-R score.
Below are some important questions that can help initiate a productive conversation around the ALSFRS-R and help you obtain the information needed to better understand the impact your score may have on your diagnosis.
- Do you use the ALSFRS-R for your patients with ALS?
- Why is the ALSFRS-R important for measuring my ALS progression?
- How often should the ALSFRS-R test be administered?
- What is my ALSFRS-R score?
- Which regions of my body is ALS primarily affecting?
- What types of symptoms am I likely to experience?
- How quickly is my ALS progressing?
- (If your score has previously been measured) What was my score when I was first diagnosed compared to my score now? What does this mean in terms of disease progression?
- Based on how my ALS is progressing, what are some appropriate interventions?
- What are good ways to help manage my symptoms and slow the progression of ALS?