Implementation and evaluation of personalized care for patients with amyotrophic lateral sclerosis (ALS): ALS Home monitoring & Coaching
Recruiting
- Conditions
- amyotrophic lateral sclerosis (ALS), progressive muscular atrophy (PMA), primary lateral sclerosis (PLS)
- Registration Number
- NL-OMON25302
- Lead Sponsor
- niversity Medical Center Utrecht, Division Neurosciences, Department of Rehabilitation
- Brief Summary
/A
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Recruiting
- Sex
- Not specified
- Target Recruitment
- 100
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
Patients or healthcare providers who do not speak Dutch cannot participate, because the (web)app is only available in Dutch (at this moment).
Study & Design
- Study Type
- Observational non invasive
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method 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 Outcome Measures
Name Time Method 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.