Table 3 Fidelity issues

Implement ALS H&C in 10 teams in 3 cycles (3 teams in Cycle 1, 3 teams in Cycle 2, 4 teams in Cycle 3), so that learnings of the first Cycle could be incorporated in the next Cycle and so on.

Due to the COVID19-pandemic the original planning of the first implementation cycle had to be adjusted slightly. As a result, Cycle 1 was not finished yet before the start of Cycle 2 and therefore there were less opportunities to implement the learnings of the first cycle into the next.

Each participating center will form a project

team, consisting of the physiatrist(s); two or three allied health professionals (i.e., one of them will become the healthcare coach, and one allied health professional will fulfill the role of knowledge broker); the manager; one scheduler;

someone who will become the administrator of the platform and can provide technical assistance if necessary; one or two ALS patients; and one or two informal caregivers. The members of each project team will be involved in the implementation of ALS H&C within their organization.

Based on the original implementation plan, each team needed to have one healthcare provider who was willing to take on the role of knowledge broker. This had to be someone with an affinity for implementation, who knew the organization well, and who would be the driving force behind the realization of the action plans. In Team 6 the knowledge broker stopped after the first meeting due to personal reasons and the project team was not able to assign this role to another team member for a while.

Team 5 did not include an informal caregiver in the project team.

Hold three preparatory meetings in which 1) ALS H&C will be introduced to the main stakeholders, 2) the target group and setting will be analyzed and the expected barriers/facilitators for implementation will be identified by the project team, and 3) the project teams develop action plans to address the expected barriers. These meetings will be held on site.

Due to the COVID19-pandemic physical visits were not possible. Instead, all meetings, except the first meeting with one team (Team 1), were held digitally via Zoom (videoconference).

The third meeting of Team 5 (developing action plans) had to be rescheduled because there were too many no-shows at the official meeting.

The healthcare professional that would take on the role of healthcare coach in Team 7 was not involved in the preparatory meetings (introduction, identifying barriers/facilitators, developing action plans) due to personal circumstances.

Each team will have three months for a pilot study with 5–10 patients to test and execute the implementation plans and to provide care with ALS H&C.

One team (Team 5) had some technical issues in the first month of the pilot phase and therefore it was decided to extend their pilot study with one month.

For each team there will be mid-term evaluations at 6 weeks (by phone/videoconference) and a final evaluation after three months (online surveys).

No deviations.

Core elements of ALS H&C

Deviations from the original innovation

ALS H&C consists of an application for patients that runs on smartphones and tablets, but can also be accessed through a computer. The application consists of a chat function for easy communication between patient and healthcare coach, a library where received information links can be saved, and three measurements:

1. A well-being question that can be answered with one of 10 smileys ranging from sad to happy and a written explanation/elaboration (optional)

2. Body weight

3. Functional status (ALSFRS questionnaire)

The data will be passed on to a central server, where a healthcare professional can view it. The healthcare coach receives automated alerts whenever there is a significant change in well-being or body weight. The healthcare coach checks and follows up on the alerts and messages whenever necessary. They will monitor the data at least once a month with the monitor function on the platform. Data is shown in graphs and any significant changes are clearly indicated. The healthcare coach provides personalized feedback via a message in the app.

No deviations, but every team experienced some small temporary technical issues with the app/platform. These bugs were all resolved relatively quickly by the provider of the application.

No deviations.

The patient is (as much as possible) in control.

No deviations.

No deviations.

A healthcare protocol, which is based on the most recent treatment guidelines for physiotherapy, occupational therapy, speech therapy, etc., gives guidance to the healthcare coach for the monitoring, providing feedback and for sending information links. Participating centers are allowed and encouraged to slightly adjust the healthcare protocol to match their context, but without changing the core elements.

No deviations.

The healthcare coach provides at least once a month feedback to the patient regarding their measurements, even if there were no changes since the last monitoring.

Team 7 did not comply with/adhere to the healthcare protocol for the monitoring with regard to the monthly feedback. The protocol states patients should always receive feedback on their measurements (once a month) even when there are no changes in their situation since the last monitoring, but Team 7 did not always do this.

A fixed frequency of outpatient consultations at the clinic for all patients is not necessary anymore, because with ALS H&C the patient can be monitored continuously. Outpatient consultations can be planned based on the needs of the patient.

Most participating teams hold 3- to 4-monthly outpatient consultations with the physiatrist and other health care professionals of the ALS team to monitor disease progression of all patients. None of the teams felt comfortable letting go of this routine (completely) just yet.

Providing information is based on the patients’ needs.

No deviations.