Implementation and evaluation of personalized care for patients with amyotrophic lateral sclerosis (ALS): ALS Home monitoring & Coaching

Background:
The e-health innovation ‘ALS Home monitoring & Coaching’ that has been developed by and implemented in UMC Utrecht in 2016, will now be implemented in 10 multidisciplinary ALS teams that are part of the ALS Care Network in the Netherlands. ‘ALS Home monitoring & Coaching’ is a care innovation for patients with ALS, PMA and PLS based on home monitoring of relevant aspects of functioning (such as walking, dressing, swallowing and breathing), body weight and quality of life. Patients transfer these monitoring data through a (web)app to their care providers. The (web)app also allows the patient to chat with the health care professional. The monitoring data is viewed by a dedicated health care provider (nurse specialist or other member of the multidisciplinary ALS team) who, in consultation with the rehabilitation specialist and the ALS team, takes action if necessary, such as giving advice, providing information, and making an appointment with other healthcare professionals within the ALS care team.

Aim:
The aim of this project is to evaluate the implementation and user experiences of both patients and healthcare providers that have been using ‘ALS Home monitoring & Coaching’.

Methods:
The implementation of ‘ALS Home monitoring & Coaching’ will be done with an Action Research based approach, taking into account local preferences, facilitators and barriers. The implementation in each ALS care team consists of three stages with a total duration of approximately 5-6 months. In the first phase we will explore the starting point and the expected barriers and facilitators. The second phase will be characterized by developing strategies to deal with the expected barriers. In the last phase the ALS care teams will include 10 patients and provide care with ‘ALS Home monitoring & Coaching’. After approximately three months the implementation outcomes and user experiences will be evaluated using both qualitative (e.g. focus groups, interviews) and quantitative methods (e.g. online questionnaires, digital observation with the (web)app, document review).

The user experiences of patients and healthcare providers with ‘ALS Home monitoring & Coaching’ are positive.

The implementation of ALS Home monitoring & Coaching will take place in three cycles. In each cycle, ALS Home monitoring & Coaching will be simultaneously implemented in 2, 4 and 4 ALS care teams respectively. The duration of each cycle is 5-6 months. The approximate time points for each cycle are described below.

T0 = presentation to provide information to the ALS care team
T1 (at 2 weeks after project start)= focus group to explore expected barriers and facilitators
T2 (at 1.5 months after project start) = group discussion to develop strategies to deal with expected barriers
T3 (at 2 months after project start) = start pilot phase by including 10 patients and provide care with 'ALS Home monitoring & Coaching'
T4 (at 5 months after project start) = to evaluate implementation outcomes and user experiences using both qualitative (e.g. focus groups, interviews) and quantitative methods (e.g. online questionnaires based at the evaluation framework by Proctor, technology acceptance model (TAM) and System Usability Scale (SUS), digital observation with the (web)app, document review)

‘ALS Home monitoring & Coaching’ is considered as care innovation not as an intervention.