Using telehealth to optimize care for people with a motor neuron disease: The digital road to personalized care

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 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.