Page 13 - jochem_helleman
P. 13
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
31
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
31
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,
32
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.