title: 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.
authors.affiliation: a Sheffield Institute for Translational Neuroscience, University of Sheffield (SITraN) , Sheffield , UK .|b School of Health and Related Research, University of Sheffield (ScHARR) , Sheffield , UK .
authors.forename: Esther V
authors.initials: EV
authors.lastname: Hobson
authors.affiliation: b School of Health and Related Research, University of Sheffield (ScHARR) , Sheffield , UK .
authors.forename: Wendy O
authors.initials: WO
authors.lastname: Baird
authors.affiliation: b School of Health and Related Research, University of Sheffield (ScHARR) , Sheffield , UK .|c Clinical Trials Research Unit, School of Health and Related Research, University of Sheffield , Sheffield , UK.
authors.forename: Cindy L
authors.initials: CL
authors.lastname: Cooper
authors.affiliation: b School of Health and Related Research, University of Sheffield (ScHARR) , Sheffield , UK .
authors.forename: Sue
authors.initials: S
authors.lastname: Mawson
authors.affiliation: a Sheffield Institute for Translational Neuroscience, University of Sheffield (SITraN) , Sheffield , UK .
authors.forename: Pamela J
authors.initials: PJ
authors.lastname: Shaw
authors.affiliation: a Sheffield Institute for Translational Neuroscience, University of Sheffield (SITraN) , Sheffield , UK .
authors.forename: Christopher J
authors.initials: CJ
authors.lastname: Mcdermott
mesh_terms: D000690:Amyotrophic Lateral Sclerosis / Q000150:complications / Q000628:therapy*; D016208:Databases, Factual / Q000706:statistics & numerical data; D003695:Delivery of Health Care / Q000379:methods*; D006801:Humans; D011788:Quality of Life; D016032:Randomized Controlled Trials as Topic; D012131:Respiratory Insufficiency / Q000209:etiology / Q000628:therapy*; D017216:Telemedicine / Q000379:methods*
keywords: Motor neuron disease/amyotrophic lateral sclerosis; survival; telemedicine; therapy; ventilation