Impact of Advances in Technology
During the recent COVID-19 pandemic, many centres experienced severe
problems in initiating home mechanical ventilation promptly and in
delivering regular follow up.(26) Telemedicine was rapidly introduced
into both adult and paediatric practice as a solution to this problem,
aided by the ability of some ventilators to provide remote monitoring
through wirelessly transmitting usage and performance data to
cloud-based web servers for remote access by participating clinicians.
These enabled clinicians to review ventilation parameters and trends of
domiciliary therapy, including information on adherence, air leaks,
pressure, and flow waveforms.
Onfofri et al. published their experience of using a combination
of teleconsultation and telemonitoring in 21 children on long-term
ventilation (including 8 patients on invasive mechanical ventilation)
during the pandemic period.(27) They demonstrated the effectiveness of
this approach, describing how this facilitated home adjustment of
ventilation parameters, identified the need to change interface and
enabled them to respond to patient symptoms and concerns promptly during
lockdown.(27)
Trucco et al performed a 2 year multicenter telemonitoring trial of
children and young people with neuromuscular disease on home mechanical
ventilation, 7 were invasively ventilated, 41 non-invasively
ventilated.(28) Home overnight monitoring of oximetry and heart rate
were transmitted weekly and there were weekly scheduled phone calls to
the patients, who were questioned on symptoms such as cough, dypsnoea,
and temperature. The information was scored, with a deviation of
>3 from baseline considered an exacerbation, prompting the
clinician to be alerted and medical advice given. The telemonitored
patients had fewer hospitalizations and their median length of
hospitalization was also significantly shorter than control patients. It
was the high severity invasively ventilated patients who benefited the
most. Feedback from caregivers regarding the telemonitoring was also
very positive.
Muñoz-Bonet et al have described their experience of telemedicine to
facilitate discharge home of 12 children on invasive mechanical
ventilation.(29) The same team also found telemedicine helped facilitate
diagnosis and early treatment of medical events, 13 out of the
recognised 141 medical events were classified as potentially life
threatening. Of these, 9 were resolved telemedically, 4 required
transfer to hospital of which 3 required hospital admission.(30)
Such successful reports have encouraged the adoption of telemonitoring
into routine care for paediatric patients on home mechanical ventilation
and demonstrate how advancing technology can improve the provision of
home care for this cohort of patients. It is likely that in time, these
approaches will be refined further, developing even easier methods of
remote care delivery.
Vo et al. recently published a novel approach for supporting
decision making around paediatric invasive mechanical ventilation, which
again highlights the way in which technological advances can be utilised
to benefit this complex patient group.(31) They described how a
parent-to-parent-web-based tool was developed to support parental
decision making, based on interviews and feedback from parents.
Evaluation of this tool by other families who had experienced caring for
a child at home on invasive ventilation provided positive feedback, with
all participants suggesting it would have helped their decision making
about home ventilation.(31) Innovative studies such as this, which take
advantage of newer web-based technology, have a key role in facilitating
impactful changes in practice to improve the experiences of families who
are faced with the prospect of home invasive ventilation for their child
in the future.
Summary and future directions
In summary, children on home
invasive mechanical ventilation are a complex patient group requiring
close monitoring and multidisciplinary care. The expansion in NIV
threatens to turn invasive ventilation into more and more a niche
concern. However, maintenance of the knowledge base and clinical
expertise for this select but high-risk cohort of patients will continue
to be vital for the foreseeable future. There is considerable variation
in worldwide practice in terms of models of care and home care
provision. Choice of equipment and monitoring are primarily dependent on
individual patient requirements, but the preference of individual
centres, often reflecting the nature of the health care system they are
situated in, also plays a role. As a general guide continuous pulse
oximetry is the preferred minimum standard monitoring method at home. In
some situations, as described, the addition of home CO2 monitoring is
recommended and may help to improve patient care, preventing hospital
visits at times. Children should be under regular follow up at
specialist respiratory centres where clinical evaluation, nocturnal
oximetry and capnography monitoring and/or poly(somno)graphy and
analysis of ventilator download data can be performed regularly to
monitor progress.
Advances in technology, for example in telemonitoring and web-based
applications have the potential to greatly benefit this complex group of
patients where travel to specialist hospitals can be challenging
especially if geographically distant. These advances and their
implementation have been accelerated by the SARS-CoV-2 pandemic. Whilst
very exciting, we need to be mindful of some of the attendant issues
such as data security and lack of legal clarity in certain scenarios.
The European Respiratory Society statement on tele-monitoring of
ventilator-dependent patients(32) described very presciently, both the
opportunities and the challenges inherent to telemonitoring,
highlighting that formal guidelines incorporating ethical, legal,
regulatory, technical and administrative standards, need to be
developed. More research identifying and refining the role of
telemonitoring continues to be urgently needed.