Motor Neuron Disease Clinical Trial
Official title:
Telehealth in Motor Neurone Disease: A Single Centre, Randomised Controlled Feasibility and Pilot Study of the Use of the TiM Telehealth System to Deliver Highly Specialised Care in Motor Neurone Disease at a Distance
Motor neurone disease (MND) is a rare but debilitating neurological condition that causes
paralysis of the body's muscles leading to severe disability and eventually death. Patients
often struggle to travel the long distances to specialist clinics to receive the care they
require whilst this expert care is often unavailable in the community. Telehealth has the
potential to enable a specialist team to monitor the health and wellbeing of patients and
their carers whilst they are at home. This could improve the patient's health, improve the
quality of life of both patients and their carers, and lead to more effective use of health
resources.
This is a randomised controlled pilot study that will involve 40 patients who are cared for
by the Sheffield Motor Neurone Disease care centre and their main informal carer (a total of
80 participants). Half of the participants will use the telehealth system for a minimum of
six months and maximum of eighteen months and information will be collected from patients,
carers and their care team. This will include collecting clinical outcome measures, health
resource use and the opinions and experience of using the system. All participants will
continue to receive their usual care.
This is a pilot study. It aims to determine the feasibility and acceptability of the
telehealth system to patients, carers and their health care providers. It also aims to
determine how a larger trial could successfully evaluate the clinical and cost-effectiveness
of the system.
MND is often referred to as amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease. ;
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