How do the ALS care recommendations in the ALS app work?

A special feature of the ALS app is the automatic generation of care recommendations. This is based on an algorithm developed by ALS experts at Charité and other leading German centers. This is based on the patient’s answers to the ALS Functional Rating Scale (ALSFRS-R), which should be completed by the patient in the ALS app at least once a month. The ALS Functional Rating Scale is an interview with 12 questions on important symptoms and motor functions, for which 5 possible answers are given. Those affected select the answer that comes closest to the actual situation. The result of this standardized interview represents an “inventory” that provides a recognized basis for therapeutic decisions.

Medication, aids or medical treatments are available for numerous symptoms and motor impairments that are recorded with the ALSFRS-R. On this basis, specific care recommendations are provided for a specific response on the ALSFRS-R. The following examples should be mentioned: For mild to moderate speech impairment (question 1 of the ALSFRS-R), the medication dextromethorphan/quinidine (DMC) is recommended, while for severe impairment, a communication device (e.g. tablet computer) is suggested. In case of excess salivation (question 2), the medication ipratropium bromide (IPRA spray) is recommended. In the case of dysphagia (question 3), the recommendations suggest an adapted form of the ALS drug riluzole (melting film or suspension) and a drinkable diet. In the case of weakness of the arms (questions 4 and 5) – depending on the severity of the weakness – the suggestions of a movement trainer, arm support system, a meal robot or an arm robot are sent. In the case of a pronounced gait disorder (question 8) or difficulty climbing stairs (question 9), a wheelchair or stairlift is recommended.

Depending on the symptoms and motor impairments specified there, a personalized care recommendation is created. The provision of assistive devices via the ALS app follows a clearly structured process of the outpatient partner care network. First, the reported need is checked by the coordinators. After consulting with the patient, they forward the request to the relevant supplier. There, they confirm the availability of the aid and, if necessary, test it. The attending physician is then contacted to confirm the medical necessity and issue a prescription.