A pediatric palliative care research team has just been set up in Lyon

Pediatric palliative care is a relatively recent discipline. It was within the framework of the first national plan for the development of palliative care and end-of-life support (2008-2012) that the first regional pediatric palliative care resource teams were born. According to Matthias Schell, pediatric oncologist coordinator of the Rhône-Alpes team (ESPPERA): Over the years, a form of expertise has developed. The clinical approach has evolved, we've acquired knowledge and reflected on our practices. Today, we need to develop research to move beyond personal convictions acquired empirically and move forward. This is why, on his initiative, the first French research team dedicated to pediatric palliative care has just been created at the Centre Léon Bérard, in Lyon.

This creation was made possible thanks to seed funding of 500,000 euros donated by the Association régionale Léon Bérard pour les enfants cancéreux (ALBEC). However, cancer patients represent only a fraction (20-30%) of the children requiring palliative care. Newborns, children with neurodegenerative diseases, certain rare diseases, or suffering from polyhandicaps that make them particularly vulnerable, also require such follow-up. It's important not to confuse palliative care with end-of-life care: there are children we follow for years points out Hélène Martinez, nurse coordinator on the ESPPERA team and research project coordinator. The palliative approach is a care process that is built in a singular way at each stage of the sick child's life. The therapeutic project, the care project and the life project coexist around a comprehensive approach to the needs of the child and his or her family.

A first in France

In pediatric palliative care, the family is always involved in care. That's why part of this new team's work will focus on the point of view of parents and children. They are in the best position to judge when is the right time to involve palliative care teams and how often. points out Matthias Schell, creator and coordinator of the research team. These different lines of research will enable us to better understand the psycho-social impact of the disease beyond the child, on parents and siblings. They could also help our practices evolve by shedding light on the meaning of our therapeutic decisions, and modify our cultures of care.

Another line of research will focus on pharmacological aspects. We'll be looking at molecules, dosage, but also routes of drug administration, because with children, it's best to avoid shots. This work has a medical slant, but also involves other disciplines (psychology, for example). The experience of parents, who sometimes administer treatments themselves with the support of doctors, is supported and accompanied by all team members.

This research will not be confined to the Rhône-Alpes region: other teams will be asked to take part at national and even international level.

A steering committee of around ten people (doctors, statisticians, qualiticians and health economists), is currently thinking about clarifying the research questions. The funds provided by ALBEC will then be used to hire researchers and PhD students. The long-term objective is to make this research team sustainable and to try to obtain more funding, notably through calls for projects.

Contact:
secretariat@esppera.fr

Photo credit: Ludovic Godard
Published April 10, 2023