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General introduction   |   11



                 Telehealth and remote monitoring


                 Telehealth is the remote provision of care through the use of digital technology and holds
                 the potential to improve accessibility and reduce burden of multidisciplinary ALS care, by
                 enabling the monitoring of patients from home (Figure 1). This approach may also enhance
                 the continuity of care, since patients can receive multidisciplinary care, even if they are no   1
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                 longer able to travel to a clinic, e.g. due to the COVID-19 pandemic.  In addition, the use of
                 telehealth facilitates monitoring in between clinic visits, which is currently limited in MND
                 care, and allows for more frequent monitoring from home, which can provide healthcare
                 professionals with insight into patients’ disease remotely. Furthermore, patients’ individual
                 home-based data can be used to tailor care and information to their ever-changing care needs.

                 Despite the promising benefits of telehealth and the wide availability of digital
                 technologies, the use of telehealth and remote monitoring in care for patients with MND
                 is limited. Correspondingly, there are only a few studies on the use of telehealth in MND
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                 care, of which many are pilot studies.  These findings suggest that telehealth services are
                 not implemented after the initial pilot phase. It is known from various healthcare settings,
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                 that the use and implementation of digital technology has noticeable barriers.  For this
                 reason 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 relevant disease-related outcome measures. In particular, the remote
                 monitoring of respiratory function is important, as it can help healthcare professionals to
                 detect respiratory decline earlier and to initiate NIV at the right time. In order to determine
                 appropriate remote respiratory measures, validity and feasibility in a home setting should
                 be investigated.



                 Aims of this thesis


                 This thesis aims to expand the knowledge on the use and implementation of telehealth in
                 multidisciplinary MND care, and to identify adequate methods for the remote monitoring
                 of patients with MND.


                 Sub-aims
                    -   To provide an overview of the current use of digital health technology in ALS care,
                        and factors that may facilitate or hinder implementation of telehealth.
                    -   To evaluate the feasibility of telehealth in multidisciplinary MND care, and the views
                        and experiences of patients with MND on the use of telehealth.
                    -   To determine which respiratory measures can best be used, in terms of validity and
                        feasibility, for the home-monitoring of respiratory function in patients with MND.
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