Self-assessment of disease progression: the ALS functional scale
The ALS functional scale (Amyotrophic Lateral Sclerosis Functional Rating Scale revised (ALSFRS-R) scale) is a questionnaire that enables people with ALS to record and evaluate the progression of their disease.
How the ALS function scale works
The ALSFRS-R questionnaire consists of twelve questions, each with five sub-questions, the answers to which are rated on a point scale from 0 to 4. This results in a total score of between 48 and 0 points, which can be used to record the status of the disease and assess its progression (rapid, intermediate, slow progression). Users are asked to answer the ALS function scale once a month via a push message.
ALS app: ALS function scale
Open ALS self-assessment questionnaire
You can access the ALS self-assessment questionnaire (ALSFRS-R questionnaire) via the “Complete” button on the homepage. The questionnaire should be completed every 2 weeks.
The ALS self-assessment questionnaire (ALSFRS questionnaire)
The ALSFRS questionnaire consists of twelve questions on the functions of the head, arms, legs, trunk and breathing. The five possible answers per question are rated on a point scale from 0 to 4. Each answer option is briefly explained.
Result with total value and progression value
After answering all 12 questions of the ALSFRS questionnaire, the total score is between 48 and 0 points. The total score of the ALS functional scale and the progression score are displayed after completing the questionnaire. The progression score can only be calculated if the date of onset of the disease has been entered beforehand.
Presentation of the course of the disease and progression value
The progression value in the ALS app offers the option of classifying the speed of disease progression as rapid, intermediate or average. It serves as a guide for those affected as well as doctors and therapists treating them. The progression calculator calculates a progression value from the current ALSFRS total value and the date of onset of the disease (classification according to Kimura F. et al., Neurology 2006). If the progression calculator indicates a progression value between 0.5 and 1.0, this is referred to as an intermediate disease progression. A progression value of less than 0.5 describes a slower disease progression and all values above 1.0 are faster disease progressions.
ALS app: ALSFRS progression chart and progression value
Progression value
On the “Progression” page, the values of the ALS functional scale are displayed in a progression diagram. The diagram provides a good understanding of the progression of the disease. The current progression value is shown in a diagram as fast, slow or average.
ALSFRSr diagram
Users are asked to answer the 12 questions on the ALS functional scale regularly. The ALSFRSr diagram shows the progression of the total score on the functional scale over time and thus depicts the course of the disease.
Dates for onset of illness and diagnosis
Your main diagnosis and the dates of onset and diagnosis are documented on the “Personal data” page. This data is important for calculating the progression value, displaying the course of the disease (ALSFRS diagram) and determining the phases of the disease (King’s phases) in the chronicle.