The ALS app automatically generates care recommendations. These are based on an algorithm developed by ALS experts at Charité and other leading German centers. This is based on the patient’s answers on the ALS Functional Rating Scale (ALSFRS-R). 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 is 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 communicated in response to a particular answer 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 systems, 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 indicated there, a personalized care recommendation is made.
The provision of aids 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.
The care recommendations are based on an algorithm that is linked to the ALS Functional Rating Scale (ALSFRS-R). The monthly surveys of the ALSFRS-R on the ALS app are the basis for specific care recommendations – in relation to medication (e.g. DMC to improve speech), aids (e.g. wheelchair provision in the case of severely restricted walking) or for nutritional and respiratory therapy (in the case of swallowing disorders or breathing difficulties). The standardized structure of the questions in the ALSFRS-R ensures that relevant symptoms are recognized early and reliably and that necessary treatments are translated into a care recommendation in good time. The main benefit of the care recommendations via the ALS app is the initiation of targeted care based on the ALSFRS-R.
Another advantage of the ALS care recommendations is their efficiency. The ALS app provides a structured interface between patients, treating physicians and care providers, including medical supply stores, pharmacies and nutrition teams. This optimizes the coordination of aids, medication and therapies. Care is no longer exclusively reactive to acute complaints, but proactive, based on the patient’s monthly functional assessments. This leads to more targeted and individually tailored care. Another important benefit of the care recommendations is that they support medical decision-making. The structured surveys of the ALSFRS-R provide doctors with a valid basis for therapy decisions. They enable an objective assessment of the course of the disease and support the initiation of care steps on the basis of data. Overall, the ALS care recommendations offer considerable benefits through the early detection and targeted treatment of symptoms, the optimization of care efficiency and the support of medical decision-making.
King’s Phase 1 contains links to various offers for the individual information needs of patients and their relatives. These include the program for the analysis of the biomarker Nf-L as a progression marker of ALS, a study to identify genetic changes (genetics of ALS) and an overview of current drug studies. Relatives may find the link to a network for relatives helpful. Contact with other relatives offers guidance in the new everyday life with the disease.
The ALS care recommendations are based on algorithms that are linked to the ALS app and the ALS Functional Rating Scale (ALSFRS-R) collected there. The recommendations are based on scientific findings, the clinical experience of ALS experts at Charité and other leading ALS centers in Germany, and care data from specialized ALS centers. The care recommendations are continuously scientifically evaluated and further developed. The results are presented and scientifically discussed at the annual meetings of the German Society of Neurology and at international ALS congresses. Through this exchange and ongoing research projects, the algorithms are optimized to enable even more precise and individualized care in the future.
The reliability of the recommendations results from the standardized data collection and the integration of the latest medical findings. At the same time, the evaluation of the care recommendations by experienced coordinators in the outpatient partner care network and the medical assessment remain an indispensable part of the concept of care recommendations via the ALS app. The recommendations therefore do not replace the clinical assessment, but supplement it by pointing out possible treatment options at an early stage.