JMIR Publications

ABSTRACT

Background:

To provide more responsive care for people with Motor Neuron Disease (pwMND) and carers a digital system was created called Telehealth in MND-Care (TiM-C). TiM-C sends regular symptom questionnaires to users, answers to which are sent to healthcare professionals (HCPs). To enable pwMND and carers to participate in research studies more easily, a parallel platform was developed from TiM-C, called TiM-Research (TiM-R). TiM-R can advertise studies, collect data, and make this available to MND researchers.

Objective:

This study has four work packages (WPs) to facilitate service implementation, co-develop the TiM systems and evaluate the service. The objectives for each WP are: 1. To determine what helps and hinders the implementation of the TiM-C system as an NHS service using semi-structured interviews with stakeholders (WP1) 2. To understand what aspects of MND care and research are currently unmet and be responded to through development of the TiM-C and TiM-R systems (WP2) 3. To conduct a process evaluation to understand how the TiM-C service influences MND care, from the perspective of pwMND, their carers, and HCPs (WP3) 4. To conduct a cost-consequence and budget impact analysis to understand the costs and benefits associated with TiM-C (WP4)

Methods:

WP1 will use semi-structured interviews with 10-15 people involved in the implementation of TiM-C to understand the barriers and facilitators to the implementation process. WP2 will use individual and group interviews with 25-35 users (pwMND, carers, HCPs, MND researchers and industry) of TiM-C and TiM-R to understand the current unmet needs of these user groups and how the TiM services can be developed to meet these needs. WP3 will use a process evaluation involving five elements; local context, engagement, user experiences, service impact, and mechanisms of action. A range of methods, including audits, services, analysis of routine data, questionnaires, interviews, and observations will be used with pwMND, carers, and HCPs, both using the system and those that declined the service when invited. WP4 will use data collected through the process evaluation and known costs to conduct a cost-consequence and budget impact analysis to explore the cost-benefit of the TiM-C service. Most data collected will be qualitative, with thematic and framework analysis being used to develop themes from transcripts and observations. Descriptive statistics or t- and chi-square tests used to describe and analyse quantitative data.

Results:

This study has received ethical approval and has been implemented in one site. A further 13 specialist MND centres will be involved throughout the study. The study will complete November 2026 and a final report produced afterwards.

Conclusions:

This study will facilitate the implementation and development of the TiM-C and TiM-R systems and fully evaluate the TiM-C service, enabling healthcare providers to make an informed decision regarding continued involvement.