In an estimated Canadian population of 34 million, approximately 2,000 – 3,000 people in Canada currently have ALS.
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. As the disease progresses, motor neurons die, leading to muscle weakness and atrophy. Tracking and assessing ALS is important for determining the severity of the disease, monitoring its progression, and evaluating the effectiveness of treatments.
A clinical assessment comprehensively evaluates the patient's symptoms and physical abilities. The assessment may include a medical history, neurological examination, muscle strength, reflexes, and coordination tests. The physician may also use a scoring system, such as the ALS Functional Rating Scale (ALSFRS), to track the patient's functional abilities over time. The ALSFRS measures the patient's ability to perform activities of daily living such as walking, dressing, and eating.
How to Track ALS
The symptoms of ALS get worse over time. Therefore, monitoring these symptoms and tracking your disease activity carefully is important. This can help you and your healthcare provider(s) better understand how ALS affects your body and how quickly it progresses. Several clinical measures have been developed to monitor your ALS. Some of these include:
Doctor-administered questionnaires ask people with ALS to rate how well different muscle groups work based on a sliding scale. The individual scores for each muscle group are then tallied, providing a high-level assessment of overall muscle function. The most well-known questionnaire is the ALS Functional Rating Scale-Revised (ALSFRS-R). The ALS Functional Rating Scale-Revised (ALSFRS-R) is a commonly used tool to assess the function and progression of the disease.
What is the ALSFRS-R?
The ALSFRS-R is a rating scale that measures the functional status of patients with ALS. It assesses the patient's ability to perform daily activities, such as walking, dressing, and speaking. The scale consists of 12 questions, each scored on a 5-point scale, with higher scores indicating better function.
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.
Turning in Bed
Dressing and Hygiene
Dyspnea (difficulty breathing)
Orthopnea (shortness of breath while lying down)
How is the ALSFRS-R Administered?
The ALSFRS-R is usually administered by a healthcare professional, such as a neurologist, nurse, or physical therapist. The patient is asked to rate their ability to perform each activity on a scale of 0 to 4, with 0 indicating no function and 4 indicating normal function.
The scores for each question are then added to provide a total score out of 48. The higher the score, the better the patient's functional status. The ALSFRS-R is typically administered every three to six months to track changes in function over time.
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.
How is the ALSFRS-R Used in Clinical Trials?
The ALSFRS-R is a widely used tool in clinical trials of new ALS treatments. It is used to measure the effectiveness of new treatments by comparing the change in ALSFRS-R scores between the treatment and placebo groups.
A change in ALSFRS-R score of two or more points in clinical trials is considered clinically meaningful. For example, if a patient's ALSFRS-R score goes from 30 to 28, this would be considered a clinically meaningful change.
Limitations of the ALSFRS-R
While the ALSFRS-R is useful for assessing ALS's function and progression, it has some limitations.
First, the scale is subjective and relies on the patient's self-reported ability to perform daily activities. This can be affected by factors such as mood, cognitive function, and motivation.
Second, the scale may not capture all aspects of disease progression, particularly in the later stages of the disease when respiratory function becomes more important.
The ALSFRS-R is an important tool for assessing the function and progression of ALS. It is a simple and easy-to-administer scale that measures a patient's ability to perform daily activities. The scale is widely used in clinical trials of new ALS treatments and is considered a clinically meaningful measure of disease progression.
While the ALSFRS-R has some limitations, it remains an important tool for monitoring the function and progression of ALS. It can provide valuable information for patients, caregivers, and healthcare professionals.
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