amyotrophic lateral sclerosis (ALS), progressive muscular atrophy (PMA), primary lateral sclerosis (PLS)
Conditions
Interventions
‘ALS Home monitoring & Coaching’ is considered as care innovation not as an intervention.
Sponsors
University Medical Center Utrecht, Division Neurosciences, Department of Rehabilitation
Eligibility
Inclusion criteria
Inclusion criteria: - All patients that have been diagnosed with amyotrophic lateral sclerosis (ALS), progressive muscular atrophy (PMA), or primary lateral sclerosis (PLS), that are under the care of one of the ALS care teams can be offered the option to use ‘ALS Home monitoring & Coaching’ for their care. To be eligible for the evaluation of ‘ALS Home monitoring & Coaching’ patients should have consented to use ‘ALS Home monitoring & Coaching’. - All healthcare providers that have been involved in the care for patients that have been using ‘ALS Home monitoring & Coaching’ are eligible to participate.
Exclusion criteria
Exclusion criteria: Patients or healthcare providers who do not speak Dutch cannot participate, because the (web)app is only available in Dutch (at this moment).
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The main study parameters will be user experience of both patients and healthcare providers of ‘ALS Home monitoring & Coaching’ in terms of usability, acceptability, appropriateness and feasibility as measured by questionnaires and interviews. | — |
Secondary
| Measure | Time frame |
|---|---|
| Secondary study parameters will be data regarding adoption, fidelity and costs of ‘ALS Home monitoring & Coaching’, that will be extracted from patients- and hospital records and researcher notes. For example, total number of patients that have been asked to participate, total number of patients that decided to participate; user-data from the (web)app, such as the number of planned measurements that have been performed; any local changes that have been made to the original plan or to ‘ALS Home monitoring & Coaching’; and time spent on monitoring of the dedicated healthcare providers. | — |
Contacts
Public ContactManon Dontje
University Medical Center Utrecht
Outcome results
None listed