E-health; ALS Home Measurement & Coaching; A blessing for the patients

In 2015, the e-health care concept ‘ALS Home Measurement & Coaching’ was developed by the University Medical Centre in Utrecht in consultation with ALS/MND patients. This new e-health care was first tested in a pilot in which 10 patients participated.

Instead of patients having to visit the ALS treatment center for checkups and consultations on a regular basis, they received a home app on their phone, tablet or PC with which they could report daily how they are doing, their weight weekly and a list of questions about specific ALS/PSMA problems on a four weekly basis.

They can also ask questions via the app at any time. The care coach answers the questions, views the data and gives feedback (in consultation with the rehabilitation physician and other care providers), often with information that was tailored to individual needs. In this way, there was no longer a need for a mandatory trip to the ALS treatment center. Appointments with the ALS treatment team were only scheduled if it was really necessary and when the patient wants it.

Introduction to more ALS treatment teams

After the trial with the 10 patients (all of whom were very enthusiastic about this new care approach), this new care system was introduced into the ALS treatment team of the UMC Utrecht, where since 2017 all patients have the possibility to receive care with the home app. As of 2020, the care concept has been rolled out to 10 other centers with a recognized ALS treatment team. And here too, the patients and the care providers were enthusiastic. Hence, there is now a desire to introduce this e-health care in all ALS treatment centers.

Patient’s own control

The reason for developing a new e-health care concept was a survey among people with ALS that showed that people were generally satisfied with the care, but would like the care to be ‘more customized’ with flexible agreements that are better tailored to the individual needs of the patient. Because the progress of the disease is for each patient different, a fixed appointment frequency (1 per 3 months) is not sufficient. Via the home app, people indicate how the complaints are progressing and based on that, an appointment can be made with a care giver. This means that the patient is in control of his or her care. And it is precisely this aspect that is seen as very positive by the patient. A perfect example of ‘personalized care’.

Healthcare processes are changing

The way of working with the home app does have implications for professionals. It requires a complete turnaround. Where professionals are used to see patients via calendar appointments, the home app takes over. The patient decides when he/she wants to see a therapist (based on his/her complaints) and not the other way around. And that is a different approach for professionals. This means that care processes must be organized differently. The big advantage for care is that many ‘unnecessary’ appointments do not have to take place, so that there is more time to look at the specific complaints of the patients. Of course, the professionals must know the patient personally and physical introductory appointments and follow-up appointments are still necessary, but at a less high frequency. The UMC Utrecht has also drawn up a care protocol that makes it easier for the ALS treatment teams to offer this new way of care.

Improving quality for life

The patients (and their informal carer/partner) are very enthusiastic and feel less burdened. And this is an important reason why the ALS patient association is advocating that this new care be made available to all people with ALS/MND in the Netherlands. And of course, the ALS treatment teams must be guided carefully in realizing the transition to implement care with ALS Home Measurement & Coaching.

Improving quality for care

Because the patient can indicate where his/her problems lie and the care coach continuously sees information from the patient, this enables a higher quality of care. As a result, care is tailored to the individual patient without unnecessarily care appointments. In fact, because the care can focus on the complaints of the individual patient, more attention can be paid to it. And that automatically improves the quality.

Improving scientific research

Because patients pass on their information via the home app, a lot of data is collected about the course of the disease that can be used for scientific research (anonymously of course and only with the patient’s consent). By studying these data, connections could be made between complaints and the course of the disease could be better predicted. So the knife cuts both ways; better patient care and better insight into the course of the disease.

Future extensions of the app

UMC Utrecht is continuously working to further improve ALS/MND care. This also applies to ALS Home Measurement & Coaching. One of the areas for improvement in this care is measuring lung function for which patients still have to come to their ALS treatment center. Previous research has shown that patients can also measure this themselves at home. A project will soon start to include the lung function measurement with additional questions about shortness of breath in the home app. In this way, the lung function can also be monitored more closely from a distance.

Austerity measure?

This is often called quickly in healthcare. Something that costs less money is an austerity measure and not a quality improvement measure. This reasoning is not relevant at all for the ALS Home Measurement & Coaching. The idea for the home app was inspired by improving the quality of care for the individual patient.

And last but not least

Given that the patients’ experiences are very positive and they are less burdened with ‘mandatory’ visits, the ALS patient association advocates rolling out ‘ALS Home Measurement & Coaching’ as soon as possible across all ALS treatment teams. This is for the benefit of the patient, but also for the benefit of the ALS treatment centers.