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.