Abstract
Motor neuron disease (MND) is a rapidly progressive neurodegenerative disease that leads
to loss of motor neurons and eventually leads to paralysis of most voluntary muscles. The
initial symptoms of MND may occur in the arms or legs, known as a spinal onset, or show
in difficulties with speech and swallowing, known as
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a bulbar onset. The average disease
duration is 2 to 4 years, and the main cause of death in patients with MND is respiratory
failure, due to severe respiratory muscle weakness. Patients with respiratory muscle
weakness, can develop hypoventilation, which leads to shortness of breath, fatigue and
sleepiness during the day, and restless sleep during the night.
Patients with MND require multidisciplinary care, which is aimed at optimizing participation
and quality of life and includes 3 to 4 monthly visits to a multidisciplinary clinic. Besides
improving quality of life, multidisciplinary MND care has shown to also prolong survival,
compared to non-specialized care. One of the most effective treatments for improving
survival in patients with MND is non-invasive ventilation (NIV), as it provides ventilatory
support when patients are respiratory insufficient. A drawback of multidisciplinary
MND care, is that accessing and receiving care at a multidisciplinary clinic can be timeconsuming and physically challenging for patients with MND, due to their physical
disability. This results in considerable burden of care, and may hinder the continuity of
care, which can increase distress and negatively affect patients’ psychological well-being.
Telehealth, which is the remote provision of care, holds the potential to improve
accessibility and personalization, and reduce burden of multidisciplinary MND care, by
enabling frequent monitoring of patients from home. Despite these promising benefits
of telehealth and the wide availability of digital technologies, the use of telehealth in care
for patients with MND is limited. For these reasons it would be of great benefit to know
what factors determine the success of the implementation of telehealth in MND care, and
what methods can best be used for remote monitoring of patients with MND. In particular,
the remote monitoring of respiratory function is important, as it can help healthcare
professionals to detect respiratory decline earlier and optimize the timing of NIV. In order
to determine which respiratory measures are appropriate for remote monitoring in a
home setting, their validity and feasibility should be investigated.
This thesis aims to expand the knowledge on the use and implementation of telehealth
in multidisciplinary MND care, and identify adequate methods for the remote monitoring
of patients with MND.
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