Variations in Practice Worldwide
Despite similarities in populations across countries, the proportion of children managed with invasive home ventilation does differ considerably between countries and centres. This is due to many factors that influence preference including local expertise, availability of NIV interfaces, technology, and healthcare costs. In high-middle income countries, it is estimated that children receiving invasive ventilation represent around 1/5th of the total population of children on home ventilatory support.(1) Whilst home ventilation is certainly feasible in developing countries,(7, 8, 9) rates of invasive ventilation have been reported to be as high as 97% in some.(10) The driver to avoid tracheostomy in countries where this is possible, has come from both an increase in expertise, available technology to enable management of children non-invasively and an awareness of the potential complications from tracheostomies. Published literature estimates complication rates ranging from 19.9%(11) to 40%(12), with infection, granuloma formation, obstruction of the cannulae and accidental decannulation all more common in children than in adults.(13) Additionally, speech impairment and feeding difficulties may also occur. The negative impact of a tracheostomy on a developing child also needs to be considered.
Models of care for children receiving invasive home ventilation also differ vastly worldwide and are largely dependent on the resources available. The American Thoracic Society published comprehensive clinical practice guidelines for paediatric chronic home invasive ventilation in 2016.(14) This included nine recommendations regarding the standards of care for this complex group of children. Similar documents have been published by other countries, with some encompassing the spectrum of children on both invasive and non-invasive ventilation and other focusing more specifically on distinct groups.(15, 16, 17) All are largely based on expert consensus opinion, due to the limited quality of evidence available in this field. The commonality amongst all these guidance statements is the recognition of the high level of risk and complexity involved in delivering care to this group of children, which necessitates structured programs delivered by multi-disciplinary teams who can ensure close monitoring of these children in the home setting. Despite these recommendation, funding for such structured programs remains variable; In the US, home healthcare is generally supported by Medicaid, Medicare, or long-term insurance.(18) In the UK, the NHS largely covers the cost involved in supporting home care for children on ventilation, with the local health authorities taking responsibility for care provision.(19) In Australia and New Zealand, funding packages are provided through federal and state services but there remains an inequity amongst regions and even between centres.(15) In comparison, in Thailand, home ventilation is not covered by any of the available healthcare funding source. Patients have a right to stay in the government hospital if they still need ventilatory support, but none of the private health insurance providers offer coverage for home care.(18) This is a common situation in developing countries, where costs for both ventilation equipment and the provision of homecare are borne by parents and families, thereby presenting significant barriers to discharge from hospital.(10)