Building Bridges, Paediatric Palliative Care in Belgium: A secondary data analysis of annual paediatric liaison team reports from 2010 to 2014

Abstract

BackgroundAlthough continuity of care in paediatric palliative care (PPC) is considered to be an essential element of quality of care, it’s implementation is challenging. In Belgium, five paediatric liaison teams (PLTs) deliver palliative care. A Royal Decree issued in 2010 provides the legal framework that defines the PLTs’ missions, as ensuring continuity of curative and palliative care between the hospital and home for children diagnosed with life-limiting conditions. This national study describes how PLTs ensure continuity of care by describing their activities and the characteristics of the children they cared for from 2010 to 2014.MethodsThematic analysis of open-ended questions was performed and descriptive statistics of aggregated data issued from annual reports, collected by the Belgian Ministry of Public Health through the Cancer Plan was used. A review panel of PLT members discussed the results and contributed to their interpretation.ResultsBetween 2010 and 2014, 3607 children and young adults (0–21 years) were cared for by the 5 Belgian PLTs (mean of 721/per year). Of these children, 50% were diagnosed with an oncological disease, 27% with a neurological or metabolic disease. Four hundred and twenty eight (428) children had died. For 51% of them, death took place at home. PLT activities include coordination; communication; curative and palliative care; education; research and fundraising. Different perceptions of what constitutes a palliative stage, heterogeneity in reporting diagnosis and the current lack of specific valid indicators to report PPC activities were found.ConclusionPLTs are offering highly individualised, flexible and integrated care from diagnosis to bereavement in all care settings. Improvements in data registration and implementation of outcome measures are foreseen.

Access to paediatric palliative care in children and adolescents with complex chronic conditions: a retrospective hospital-based study in Brussels, Belgium

“…The high proportion of children with CCC who are not referred to PLTs, especially those under 1 year, may be partially explained by the fact that many of these children die before they are discharged from hospital, but also because neonatal palliative care is overlooked in Belgium. Furthermore, a previous study conducted by Friedel et al indicated that from all children followed up annually by PLTs at a nationwide level (n=721), a high proportion of home deaths (51%) occurred for all children who died (n=85) and therefore were neither registered in death hospital databases 13. The maximum number of 721 children followed up annually by the five PLTs in Belgium invalidates therefore the hypothesis according which the high number of patients with a CCC attending Brussels hospitals (n=22 533) may have been referred to PLTs outside Brussels.…”

“…Second, in 2015, the International Classification of Diseases, Ninth Revision (ICD-9) classification changed in Belgium to ICD-10. Third, the only published study on the number of children referred to PLTs in Belgium was based on the same 5-year period 13…”

Clinical Characteristics of the End-of-Life Phase in Children with Life-Limiting Diseases: Retrospective Study from a Single Center for Pediatric Palliative Care

“…Between 2009 and 2014, 61% of our patients died at home [ 14 ], and a similar tendency is visible for the period between 2016 and June 2019 (58%). In the corresponding literature, this number is also reported around 50% [ 7 , 9 , 15 ]. With the help of SAPPV, dying under adequate symptom control outside a hospital setting seems feasible.…”

Invasive Home Mechanical Ventilation: 10-Year Experience of a Pediatric Home Care Service

“…In Europe, various palliative care services have been developed over the last two decades, which can be found in different sectors and are divided into hospitals, autonomous installations, or home services. 19 However, there is still no consensus as to which of these offers the best continuation of care. 20 We also observed the impact of HCS in assisting children with invasive HMV for the release of hospital beds.…”