ALS Thuismeten & Coachen — Nationwide E-Health Home-Monitoring for Motor Neuron Disease

Amyotrophic lateral sclerosis (ALS) and related motor neuron diseases progressively remove patients' ability to travel, speak or type, making standard follow-up clinic visits exhausting and infrequent. The ALS Centre at University Medical Center Utrecht built 'ALS Thuismeten & Coachen' (ALS Home-Monitoring & Coaching), an e-health platform letting patients report daily well-being, weekly weight and monthly functional status (ALSFRS) from home via a mobile app, with alerts routed to a coaching nurse practitioner.

The aim was to let a rapidly progressing, communication-limiting disease population self-monitor from home rather than travel for infrequent in-person checks, while flagging deterioration to clinical staff early through automated alerts.

The service moved from a 10-patient pilot in 2017 into regular UMC Utrecht care, then into a nationwide rollout across 10 multidisciplinary ALS rehabilitation teams. Of 128 eligible patients invited between February 2020 and December 2021, 90 agreed to participate and 86 actually started using the app.

Surveyed patients rated the care concept a median 8.0/10 and the app itself 7.0/10, and 88.0% intended to keep using it for at least six more months. However, only 7 of 9 teams that completed the pilot sustained the service afterward — mainly because the app did not integrate with hospitals' electronic health records — and clinicians' own System Usability Scale score for the platform was 58.8, below the commonly used 68-point 'average' benchmark, with 76.4% saying it never became part of routine practice and 32.0% reporting extra workload.

The nationwide evaluation, published in BMC Health Services Research, is a useful case showing that patient-side satisfaction does not by itself guarantee institutional sustainability; the trial also ran in a country with roughly 97% household internet access, so its adoption figures may not transfer directly to lower-connectivity settings.