What Is the ALSFRS-R?
Today, the ALSFRS-R is a widely used test in clinical trials to track ALS and is considered the gold standard measure of disability progression.
The ALSFRS was first developed and used in the 1990s, but since then has been revised and refined.
How Does It Work?
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.
|Handwriting||Cutting food||Climbing stairs|
|Turning in bed||Walking||Dressing and hygiene|
(Shortness of breath while lying down)
|Turning in bed|
|Dypspnea (difficulty breathing)|
|Orthopnea (Shortness of breath while lying down)|
|Dressing and hygiene|
How Is the ALSFRS-R Administered?
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.
Your ALSFRS-R Score Matters
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.
Every Score Is Personal
In fact, even if two 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.*†
†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.
Discussing the ALSFRS-R With Your Healthcare Provider(s)
Below are some important questions that can help initiate a productive conversation around the ALSFRS-R scale and help you obtain the information needed to better understand the impact your score can have on your diagnosis.
- Do you use the ALSFRS-R with other people 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?