How and why can a breathing effort be documented in the ALS app?

Respiratory effort (dyspnoea) can be recorded using the ALS functional scale (ALSFRS-R-SE). Self-assessment of the ALSFRS-R is possible via the ALS app. The “ALS questionnaire” is offered on the start page of the ALS app. The questionnaire comprises a total of twelve questions on typical symptoms of ALS, which can be answered in less than 5 minutes. Questions 10 and 11 are particularly important for recording respiratory dysfunction. These questions relate to breathing effort during exertion and at rest (question 10) and when lying in a sleeping position (question 11).

A monthly survey of the ALSFRS-R-SE is recommended. These data are of great interest for “self-monitoring”, but also for the treating physicians and for ALS research. The systematic recording of dyspnoea has the advantage that a possible respiratory effort can be recognized and documented at an early stage. This information can help the treating physicians to make a decision in favor of a breathing aid with mask ventilation.