Making the invisible more visible: a retrospective study identifying children and adolescents with complex chronic conditions and their access to specialised palliative care teams.

Friedel, Marie;Gilson, Aurélie;Bouckenaere, Dominique;Brichard, Bénédicte;Aujoulat, Isabelle;et.al.
(2019) 16th World Congress of the European Association of Palliative Care (EAPC) — Location: Berlin, Germany (22.May.2019)

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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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Friedel, M., Gilson, A., Bouckenaere, D., Brichard, B., Fonteyne, C., Wojcik, T., Mahboub, A., Lahaye, M., & Aujoulat, I. (2019). Making the invisible more visible: a retrospective study identifying children and adolescents with complex chronic conditions and their access to specialised palliative care teams. BMJ- Paediatrics Open, 3(1), e000547. https://hdl.handle.net/2078.5/218614 (Original work published 2019)