The ALS care algorithm

Care algorithm for improving care in ALS

As part of a research project, APST has developed a care algorithm for people with amyotrophic lateral sclerosis (ALS). The care algorithm provides care recommendations for compensating for motor impairments with assistive devices. These recommendations are based on the digital analysis of patterns in the ALS Functional Rating Scale (ALSFRS-R, ALS Functional Rating Scale Revised), which is collected by patients themselves – in the sense of a “self-assessment”.

The care algorithm receives the data from the ALS function scale. The data analysis then leads to a care recommendation (e.g. need for a communication aid for a speech disorder or the care option with a mobility aid).

The care recommendation is evaluated by coordinators from APST, discussed with the patient through contact and agreed with the treating specialists (especially at ALS outpatient clinics). The algorithm-based care recommendation ultimately serves to support decision-making by doctors in ALS outpatient clinics.

The current care algorithm provides care recommendations for aids for mobility and communication impairments and medication for symptomatic treatment. The overarching aim is to use care algorithms – in addition to the existing care structures – to enable people with ALS to be treated even more quickly and in line with their needs.

Further information

Behavior of the algorithm on the provision of assistive devices

Currently, many supply processes for medical aids are still opaque, inefficient and not very reproducible. Our care algorithm aims to change this. The care algorithm is a clinical decision support system that doctors can use to improve patient care. The care algorithm can be used to predict the appropriate time for the provision of certain aids. This makes care processes more transparent and predictable for patients, treating physicians and payers.

In the current research project, we want to investigate the behavior of the algorithm on the provision of special aids. On the one hand, algorithm-based care recommendations offer a great opportunity for care, but they can also be flawed. We would like to clarify the question of how the algorithm can contribute to the appropriate provision of aids for mobility and communication in the various phases of ALS.

How is the care algorithm applied?

People with ALS who are being cared for in an ALS center are invited to take part in the digital recording of the ALS function scale via the ALS app or the APST Portal. The time required is around 10 minutes per quarter. The ALS Functional Scale involves answering 12 questions about motor functions. The care algorithm uses the data from the ALS function scale to provide care recommendations for specific aids. All care recommendations are listed in an overview for case managers on the care platform of APST. The case managers are also referred to as ALS pilots, as they are familiar with the care algorithms and know their performance and susceptibility to errors. The ALS pilots carry out an initial plausibility check of the care recommendations, which they are able to do due to their training. The next step involves verbal or written contact between ALS pilots and those affected. During this contact, the usability of the care recommendation for the patient is discussed. After discussing the care recommendation with the ALS pilots, the algorithm recommendation is presented to the treating specialists in an ALS outpatient clinic.

The care algorithm for decision support can complement medical expertise and experience in a very valuable way. The specialists review the recommendation of the care algorithm and make the decision to provide an assistive device from a medical perspective. The responsibility for the indications for treatment remains with the doctors. The care algorithm provides the specialists with a recommendation for action to support their work in the ALS outpatient clinic.

Scientific evaluation of the care algorithm

The influence of the care algorithm on the quality of care is investigated by a scientific analysis of the data from the care processes. Our hypothesis is that care algorithms improve the care of people with ALS.

Video

ALS care algorithm