E-health innovation in ALS care

With the emergence of new healthcare innovations, good patient education and effective instructions are becoming more important every day. Elevate co-created an e-learning solution aimed at ALS patients to get started with respiratory function measurement at home.

Tailor-made care. More control over your own care. Fewer hospital appointments. Better insight into your own disease. Low-threshold contact with healthcare providers. These are all benefits that, thanks to recent innovations and the use of e-health, improve care for people with ALS, PSMA and PLS. Not only the patients, but also the healthcare providers benefit from this.

Home measurement

The national expertise center in the field of ALS, PSMA and PLS, which is coordinated from UMC Utrecht, is the driving force behind such innovations. In 2019, the ALS Center received a subsidy from ZonMw to roll out the ALS Home Measurement & Coaching platform nationwide. In January 2020 they started to implement this new care with the ALS app in 10 ALS treatment teams of the ALS Care Network. The ultimate goal: all people with ALS, PSMA and PLS have access to the new care platform. At the same time, various studies are being carried out to see whether home measurements can be further improved.

Physiotherapist and researcher Dr. Jaap Bakers, specialized in neurological disorders and member of the ALS treatment team at UMC Utrecht, is involved in such research. In March 2023, he started a pilot aimed at implementing home measurement of respiratory function in ALS in 5 treatment centers in the Netherlands.

Dr. Jaap Bakers, physiotherapist/researcher, member ALS treatment team, UMC Utrecht

“For this online module I had already made a scenario myself. The instructional designers at Elevate advised me on the correct format and didactic design. I really liked the creative process and the support from Elevate. This e-learning went live within 2.5 months and the result has become exactly what I was looking for.”

Why measure respiratory function?

Measuring the respiratory function for ALS is important. These measurements give an impression of the speed of the disease course and contribute to the timely initiation of symptomatic interventions that relieve complaints of reduced respiratory function. Measuring the respiratory function is now done under the supervision of a professional in the hospital. This method has several disadvantages, such as it is stressful for patients to come to the hospital and the measurements cannot be carried out frequently.

Within this project, the goal is to implement home measurement of the respiratory function in 5 large ALS treatment teams in the Netherlands, so in total 50 patients will independently measure their respiratory function at home for six months.

Video in the e-learning “Ademhalingstest met ALS”

Effective instruction in blended form

Performing the test independently is something that the patients must learn. For this, a professional will give 1 on 1 instructions to the patient. In the context of this study, Elevate’s e-learning consultants were asked to design an additional e-learning module, with the following two objectives: (1) a short introduction in preparation for the instructional moment, so that it can proceed efficiently and (2) a reference work that can be consulted after the instruction moment, containing visual material about the correct execution of the tests and sharing of the results.

Accessible, clear instructions and recognition

The collaboration with Jaap has resulted in an e-learning that is easily accessible. Characteristic are the clean look & feel, the clear, short instructional videos and the reference work.

The e-learning provides guidance to the patient in an accessible way. The various phases of independent measurement are followed step by step. The patient begins with preparation for the appointment. As a result, the patient knows what will be discussed and the patient can better absorb the information during the appointment. Then the physical appointment takes place.

After the appointment, the patient can use the reference module for things that are not yet completely clear, or to refresh their memory. The reference work consists of short videos in which an action is demonstrated. The questionnaires for the patient are also included in the reference work. It also contains photos with correct and incorrect postures and manuals about equipment. Finally, the frequently asked questions are answered.

The different modules of the e-learning

Positive experiences and a successful pilot

At the time of the pilot (spring 2023), the first reactions and experiences with this blended form of instruction are positive. Users appreciate the short instructional videos, especially because of the recognizable home setting and the calm explanation, combined with some interactive working methods and background information.

The chosen format of this e-learning module is ideal for information and instructions aimed at patients and/or care providers. Together with other researchers within the ALS center, Elevate will develop even more e-learning modules for patient education in the near future.

More information?

This project was realized in collaboration with ALS Center. Are you curious about the e-learning? Then you can view it here: e-learning “Ademhalingstest met ALS”.

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