Using technology to improve access to specialist care in amyotrophic lateral sclerosis: A systematic review

Abstract

Our objective was to review the evidence for using technology to improve access to specialist care for patients with amyotrophic lateral sclerosis (ALS) and their carers.

Medline, Google Scholar and the Cochrane library were searched for articles describing technology that enabled clinical care of patients with ALS or their carers where the patient/carer and clinician were not in the same location. Two applications were identified: telemedicine to facilitate video conferencing as an alternative to outpatient consultations and telehealth monitoring for patients with respiratory failure. One randomized controlled trial using telehealth in patients with respiratory failure including 22 patients with ALS was identified. While rates of hospitalization were reduced, overall mortality was unchanged and there were too few patients with ALS in the study to detect significant benefit. In conclusion, there is limited evidence to support the use of telemedicine or telehealth in the care of patients with ALS. Future research needs to develop an understanding of the key beneficial aspects of the traditional specialist ALS service and how these factors could be delivered using technology. Successful evaluation and implementation of technologies to facilitate access to specialist care will only be possible if all the relevant impacts of an intervention are understood and measured.

Key words:

• Motor neuron disease/amyotrophic lateral sclerosis
• telemedicine
• ventilation
• therapy
• survival

Acknowledgements

All the authors are conducting a trial of telehealth in collaboration with Mylan, UK and supported by the Motor Neurone Disease Association.

Declaration of interest

This research is funding by a National Institute for Health Research (NIHR) Doctoral Research Fellowship awarded to EH [grant number DRF-2013-06-076]. PJS is supported as an NIHR Senior Investigator. This paper acknowledges the support of The National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care Yorkshire and Humber (NIHR CLAHRC YH) www.clahrc-yh.nir.ac.uk. The views and opinions expressed are those of the authors, and not necessarily those of the NHS, the NIHR or the Department of Health.