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)