Study on paediatric palliative care in children and adolescents with complex chronic conditions

Friedel M, Gilson A, Bouckenaere D, Brichard B, Fonteyne C, Wojcik T, De Clercq E, Guillet A, Mahboub A, Lahaye M, Aujoulat I.

BMJ Paediatrics Open 2019;3:e000547. doi: 10.1136/bmjpo-2019-000547

Background Paediatric complex chronic conditions (CCCs) are life-limiting conditions requiring paediatric palliative care, which, in Belgium, is provided through paediatric liaison teams (PLTs). Like the number of children and adolescents with these conditions in Belgium, their referral to PLTs is unknown.

Objectives The aim of the study was to identify, over a 5-year period (2010–2014), the number of children and adolescents (0–19 years) living with a CCC, and also their referral to PLTs.

Methods International Classification of Disease codes (ICD-9) corresponding to a CCC, as described by Feudtner et al, and national registration numbers were extracted from the databases of all hospitals (n=8) and PLTs (n=2) based in the Brussels region. Aggregated data and pseudonymised national registration number were transmitted to the research team by a Trusted Third Party (eHealth). Ages and diagnostic categories were calculated using descriptive statistics.

Results Over 5 years (2010–2014) in the Brussels region, a total of 22 721 children/adolescents aged 0–19 years were diagnosed with a CCC. Of this number, 22 533 were identified through hospital registries and 572 through PLT registries. By comparing the registries, we found that of the 22 533 children/adolescents admitted to hospital, only 384 (1.7%) were also referred to a PLT.

Conclusion In Belgium, there may be too few referrals of children and adolescents with CCC to PLTs that ensure continuity of care.

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This study was commissioned by the Brussels Federation for Palliative and Continuing Care (FBSP - BFPZ) and funded by the Belgian Foundation against cancer