Introduction
A complex chronic condition (CCC) “can be reasonably expected to last at least 12 months (unless death intervenes) and to involve either different organ systems or one organ system severely enough to require specialty paediatric care and probably some period of hospitalisation in a tertiary care centre”.1 Life-threatening diseases are diseases which might shorten life expectancy. Life-limiting conditions are defined as health conditions with no reasonable hope of cure and that will ultimately lead to early death.2 A complex chronic condition is sometimes life limiting and often life threatening and might require paediatric palliative care at different stages.3 It is not easy to establish the number of children living with a life-limiting condition.4 In England, Fraser et al 5 found a prevalence of 3.2% of children (0–19 years) living with such a condition, and Jarvis et al found in the CHiSP study conducted in Scotland from 2009 to 2014 that 20 436 children and young people (0–25 years) were identified as having life-limiting conditions.6
Many other studies relied on death registries to estimate the number of children with CCCs. A Canadian study found that 26.8% of the 4199 children aged 0–19 years who died between 1997 and 2001 had had a CCC, and that 48% had died in the first 6 months of life.7 A quarter of the 11 194 children aged 1–19 years who died in France between 2005 and 2008 had a CCC.8 A European multicentre study showed that a third of the 299 children aged 1–17 years who died in Belgium in 2008 (35.8%, n=107) had had a CCC.9
However, it is known that relying on death record data only does not reflect the real number of children with a life-limiting or life-threatening condition, and therefore it is recommended to use routine health data.10
Paediatric Palliative Care for children/adolescents in Belgium is provided through five paediatric liaison teams (PLTs), each of which is attached to a university hospital. The mission per centre is to ensure continuity of care through all care settings (in and out of hospital) for children with life-limiting or life-threatening conditions, including CCCs. Funding of these PLTs has been integrated into the Belgian Health coverage since 2010.11 In 2016, the legislation was modified to state that palliative care should not be restricted to end-of-life care but should be provided progressively according to patients’ needs and wishes, independently of life expectancy.12
It is not known how many children and adolescents live with CCCs in Belgium or what access they have to paediatric liaison care teams. Hypothesising that many children living with CCCs are not referred to a PLT, we wished to establish (1) the number of children/adolescents (0–19 years) with CCCs and (2) the percentage referred to PLTs in Belgium’s Brussels Region, which has eight hospitals with a paediatric unit and two PLTs.