A systematic review of telemedicine for neuromuscular diseases: components and determinants of practice

Abstract

Abstract Introduction Neuromuscular diseases (NMDs) entail a group of mostly inherited genetic disorders with heterogeneous phenotypes impacting muscles, the central or peripheral nervous system. They can lead to severe disabilities and shortened lifespans. Despite their severity, NMDs often lack in public awareness and appropriate medical and social support. Telemedicine can improve patients’ and caregivers’ lives by enhancing continuity of and access to care. The first aim of this systematic review was to summarise the status quo of telemedicine services for patients with NMDs. Secondly, barriers and facilitators of the respective implementation processes should be analysed. Methods The databases PubMed, Web of Science and CENTRAL by Cochrane were searched in May 2022. To be truly explorative, any original evidence from any setting was included. Two independent researchers completed the screening process. Data was extracted and analysed using the taxonomy of Bashshur et al. (2011) and the Consolidated Framework for Implementation Research (CFIR). Results Fifty-seven original papers were included in the systematic review. The results showed a high representation of teleconsultations and remote monitoring studies. Teleconsultations replaced in person appointments and telemonitoring mostly focused on ventilation. Physical therapy, pulmonology, neurology, and psychology were the most represented medical specialties. We found barriers and facilitators relating to implementation mainly referred to the intervention and the individuals involved. Technical errors and inaccessibility due to a lack of technical devices or the patient’s disability were stated as hindrances. A positive mindset of users as well as patient empowerment were necessary for the adoption of new technology. Technophobia or uncertainty around technology negatively impacted the implementation process. Discussion This systematic review provides an overview of the current use of telemedicine in patients with NMDs. The distribution of telemedicine interventions between the defined domains was very heterogenous. Previous research has neglected to fully describe the implementation process of telemedicine for NMDs. Conclusion The evidence shows that telemedicine can benefit patients with NMDs in a multitude of ways. Therefore, health policies should endorse and incentivise the uptake of telemedicine by institutions and health care workers. Further research needs to be conducted to confirm the current evidence and close existing research gaps.