When an individual is diagnosed with amyotrophic lateral sclerosis (ALS), it is essential to continuously monitor their physical health for any changes so that they can receive the appropriate care.
One of the key elements in providing support relies on the monitoring of specific functional changes such as speech, movement, walking and the ability to swallow.
This is undertaken using the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS). It is widely employed for patients around the world, including in the USA.
The ALS Functional Rating Scale is designed to provide a quick and uniform assessment of patients and determine how the disease is affecting them at any given time.
It covers four functional areas: speech, swallowing and upper and lower movement of the extremities.
Within these areas there are various measures including handwriting, walking, using eating utensils, and climbing the stairs.
The original ALSFRS was updated in recent years to include extra measures and is now referred to as ALSFRS-R, with the ‘R’ standing for revised. These new measures are dyspnea, orthopnea and respiratory insufficiency.
The purpose of the ALSFRS is to provide an ongoing measure of how the disease is affecting the individual who has been diagnosed with ALS. Twelve measures are scored from 0 to 4.
Zero means there is no function at all and 4 means there is full function.
ALS can affect different parts of the body depending not only on the individual but the type and progression of the disease itself. The ALSFRS-R severity scale is an important tool for measuring the progression of ALS in a diagnosed individual, but is not always useful when comparing symptoms between different patients.
It does, however, deliver a relatively high degree of agreement when the scale is used by different examiners.
The patient is tested at regular intervals and this gives practitioners the ALSFRS-R slope, a graph which indicates the speed and progression that potentially lies ahead. Other measures, such as vital capacity concerning the lungs and the Sickness Impact Profile (SIP), can be used with the ALSFRS-R to provide a more detailed analysis of the patient’s condition.
The individual measures of ALSFRS-R will vary depending on the progression of the disease. There are 12 parameters and a top score of 48 which you would expect with a fully functional and healthy individual.
The ALSFRS-R severity scale is a useful tool for practitioners and patients to gauge the progress of the disease and regular testing can help prepare for future challenges.