Care algorithm – improving the provision of care in cases of ALS
An algorithm, according to Wikipedia, is a “unique set of instructions for solving a problem”. In a digital care algorithm, a course of action for solving a care problem is transferred to software. Within the scope of a research project, APST has developed a care algorithm for people with amyotrophic lateral sclerosis (ALS) for the first time. The digital care algorithm provides recommendations for compensating motor impairments with assistive devices. These recommendations are created through the analysis of patterns in the ALS Functional Rating Scale Revised (ALSFRS-R), which is collected by patients themselves – in the sense of a “self-assessment”.
ALS Functional Rating Scale as a basis for the care algorithm
The algorithms are developed based on the self-assessment of the progression of disabilities according to the ALS Functional Rating Scale revised (ALSFRSr). With the ALS Functional Scale, the individual progression of the disease can be assessed by the affected person himself. The care algorithm receives the data from the ALS Functional Scale. The data of the digital self-assessment of the ALSFRSr (collected via the ALS app or the APST portal) is structured according to body region first (e. g. bulbar region with effects on speaking and swallowing or the leg region with possible restrictions on walking and taking stairs). Subsequently, the self-assessment according to the ALSFRSr is being analysed by the care algorithm (e.g. is there a speech or swallowing disorder or a gait disorder? How severe is the speech, swallowing or gait disorder?). The data analysis then leads to a recommendation for a specific aid (e. g. a communication aid in case of a speech disorder or a mobility aid in case of a gait disorder).
The care recommendation is then discussed by the APST Care Coordinators with the patients and coordinated with the treating specialists (especially at specialised ALS-Centres). The algorithm-based care recommendation ultimately serves to support decision-making by physicians in specialised ALS-centers. This research project is currently being realised in cooperation with the ALS center of the Charité. In the coming months, the inclusion of other ALS centers into this project is planned.
The current care algorithm provides recommendations for aids for restrictions in mobility and communication only. In the future, it is planned to explore the supportive function of algorithms in the provision of medication and the initiation of nutritional therapy. The overarching goal is to use care algorithms – in addition to the existing care structures – to make it possible to treat people with ALS even faster and in a more needs-oriented manner.
Figure: Collection of self-assessment data and care algorithms
Effects of the algorithm on the supply of aids
Currently, many supply processes for medical aids are still opaque and inefficient. Our care algorithm is intended to change this. The care algorithm is a clinical decision support system that doctors can use to improve patient care. For example, the care algorithm can be used to predict the appropriate time for the provision of certain aids. This makes the care processes more transparent and predictable for patients, treating physicians and cost units.
Currently we explore the behaviour of the algorithm on the supply with special aids as a research project. Algorithm-based care recommendations offer a great opportunity for care on one hand, but can also be error prone. We would like to clarify the question of what contribution the algorithm can make to the appropriate provision of aids for mobility and communication in the various phases of ALS.
How is the supply algorithm apllied?
ALS patients who are receiving care at an ALS center are invited to participate in the digital recording of the ALS function scale via the ALS app or the APST web portal. The time required is about 10 minutes every three months. The ALS Functional Scale involves answering 12 questions about motor functions.
Figure: the ALS-Care-Algorithm for assitive devices and its implementation within the APST care network
The care algorithm provides care recommendations for certain aids from the data of the ALS function scale. On the web portal of APST, all care recommendations are listed in an overview for the care managers. The care managers are also called ALS pilots because they are familiar with the supply algorithms and know their performance and susceptibility to errors. The ALS pilots carry out an initial plausibility check of the care recommendations, which their specialised training enables them to. The next step is an oral or written contact between the ALS pilots and the persons concerned. During this contact, the usability of the care recommendation for the patient is discussed.
Illustration: participating ALS centres within the APST network and the research project on the ALS care algorithm
After discussing the care recommendation with the ALS pilots, the algorithm’s recommendation is given to the treating specialists in an ALS center. The care algorithm for decision support can complement medical competences and experiences in a very valuable way. The specialists review the recommendation of the care algorithm and make the decision for the supply with an assistive device from a medical point of view. The responsibility for the indication of a match remains with the physicians. With the care algorithm, the specialists are given a recommendation for action that is intended to support the work in the specialised ALS centers.
Scientific Evaluation of the Care Algorithm
The impact of the care algorithm on the quality of care is being evaluated by a scientific analysis of the data from the care processes. Our hypothesis is that the care algorithm leads to an improved quality of care for people with ALS.
Thank you for your interest and participation in our research project. If you have any questions, please do not hesitate to contact our two ALS pilots.
Anja Weiss, Coordinator and ALS pilot Oliver Scholz, Coordinator and ALS pilot firstname.lastname@example.org phone: +49 30-81031410