UC research highlights the importance of improving paediatric palliative care in Portugal

English version: Diana Taborda

A research team coordinated by the University of Coimbra (UC) highlights the importance of paediatric palliative care (PPC) to improve the care provided - especially aiming at reducing invasive therapies and procedures in this age group - after analysing data collected in the Coimbra Paediatric Hospital during the last year of life of children with life-limiting complex chronic conditions (CCC). The scientific study, which was carried out in collaboration with the Coimbra Hospital and University Centre (CHUC), further underlines that early implementation of PPC optimises the use of hospital resources.

"This research reinforces the urgent need to provide the national paediatric services with teams with proper training in paediatric palliative care, in order to guarantee an adequate response to children with advanced, and mostly progressive diseases, whose evolution towards the end of life may be possible to anticipate and plan, ensuring the best care," stresses the research team.

The researchers refer that currently "the international literature is still scarce regarding the use of hospital resources in children with complex chronic diseases in their last year of life. In Portugal there are only five teams specialised in paediatric palliative care, and, although there are several being developed, there is still a great deficit in terms of resources, training and geographical coverage".

The team examined clinical records of the last year of life of 72 children aged 1-18 years with chronic complex condition (namely oncological, neurological or cardiovascular diseases), between January 2016 and December 2020.

A comparative study was conducted with two groups: a group that was accompanied by a specialised paediatric palliative care team and a group without this follow-up. Three main domains were analysed: the impact of paediatric palliative care monitoring on the use of hospital resources, therapeutics used, and the care provided in the last week of life.

While analysing the data regarding the group that was accompanied by a specialised paediatric palliative care team, the researchers concluded that there was "less use of invasive procedures and therapies and fewer deaths in the intensive care unit, with an optimised use of hospital resources", explains the research team. However, most children are still not referred to paediatric palliative care at an earlier stage. “It is therefore important to raise awareness among health professionals to involve these teams as soon as they identify a case of a life-limiting complex chronic condition”.

The research team also mentions the importance of "continuing research on paediatric palliative care with regard to the impact on the quality of life of children and their families, the burden associated with treatment and costs resulting from hospital admission". They further add that “in addition, it will be crucial to analyse the impact of home-based paediatric palliative care support in the lives of children and their families - parents, siblings, grandparents and other kin - as well as the possibility of reducing hospital admissions, with well-structured home-based support networks”.

The study involved researchers and professors of the Faculty of Medicine of the University of Coimbra (FMUC), as well as Medical Doctors at the Coimbra Hospital and University Centre (CHUC): Andreia Nogueira (paediatrician of the CHUC paediatric palliative care team), Bárbara Gomes (FMUC researcher), Cândida Cancelinha (study coordinator, FMUC professor and Coordinating Doctor of the CHUC paediatric palliative care team), Diana Correia (FMUC student) and Marisa Loureiro (FMUC researcher).

The scientific article “The needs of children receiving end of life care and the impact of a paediatric palliative care team: a retrospective cohort study”, available here, was published in the European Journal of Pediatrics. This is the most recent study of the Palliative, End of Life and Bereavement Care Group, of the Coimbra Institute for Clinical and Biomedical Research (iCBR).