1. THE BELGIAN LIAISON MODEL OF PAEDIATRIC PALLIATIVE CARE
First findings of a retrospective study based on a national database
Marie Friedel ¹, Bénédicte Brichard ¹, Christine Fonteyne ², Jean-Paul Misson ³, Marleen Renard ⁴,
Els Vandecruys ⁵, Françoise Verfaillie ³, Ilse Ruysseveldt ⁴, Corinne Tonon ⁶, Georgette Hendrijckx ², Isabelle Aujoulat ¹
Université catholique de Louvain, Bruxelles Hôpital universitaire des enfants Reine Fabiola, Bruxelles 3. Centre hospitalier régional de la Citadelle, Liège
4. Universitair Ziekenhuis Leuven, Leuven 5. Universitair Ziekenhuis Gent, Gent 6. Cliniques universitaires saint-Luc, Bruxelles
Introduction
Research Objectives
Description of
the type of activities delivered by the 5 liaison teams since 2010;
the characteristics of the children followed;
difficulties and needs expressed by teams.
Since 1989, five interdisciplinary teams are delivering paediatric palliative care all across Belgium. A Royal Decree issued in 2010 provides the legal framework that defines the liaison team’s missions in Belgium ( Those are partially funded by the Federal Ministry of Health through the Cancer Plan. The mission is to ensure continuity and quality of curative and palliative care between hospital and home for children with life-limiting conditions, starting at diagnosis.
Methodology
Analysis of the qualitative and quantitative data collected annually (2011 – 2014) available in a national database at the Federal Ministry of Health.
Discussion of preliminary results with paediatric liaison teams.
Results
More than 700 children from 0 to 21 years of age, with life-limiting illnesses were followed per year by the 5 liaison teams. Of these children, 50% were suffering of an oncologic pathology. Around 100 children died on an annual basis during the follow-up period. In half of the cases, death occurred at home. Trends in the distribution and evolution of activities and in the characteristics of children differ between the 5 teams. The profiles of children are progressively characterised by chronic complex care conditions, linked with important social needs. The composition of the paediatric liaison team is foreseen by the Royal Decree, but financing by government is insufficient.
Paediatric liaison teams main activities:
Paediatric
liaison team
Bereavement
care
Coordination
Education and palliative care
Visibility
Fundraising
Curative and palliative care
Communication
Discussion / Conclusion
Belgian paediatric liaison teams have developed since 1989 an expertise in paediatric palliative care, offering high individualized, flexible care from diagnosis to bereavement in all care settings.
Diversity of care and workload are not truly reflected in the results, because of the lack of specific valid indicators used for annual reporting. Teams express the necessity of creating valid indicators to measure quality of care and workload in PPC.
Institutional funding is limited, obliging teams to dedicate energy in fundraising.
This study was funded by:
Institut de recherche santé et société (IRSS) - Institute of Health and Society
contact: Clos Chapelle-aux-Champs, 30 bte B – 1200 Bruxelles (Belgique)