The Palliakid project launched to improve pediatric palliative care
IDIAPJGol is one of 17 European institutions working together in a consortium to improve access to palliative care for children with advanced, complex or terminal illnesses.
The Palliakid palliative care project is a European initiative aimed at providing access to palliative care for children with advanced, complex, or terminal illnesses, with the aim of improving their well-being and quality of life. IDIAP Jordi Gol i Gurina is part of the consortium consisting of 17 partners from 12 European countries that will implement the programme. IDIAPJGol's role will be to contribute foundational knowledge from primary care. Researchers from IDIAP Jordi Gol have developed the HEXCOM tool to assess the complexity of palliative care in adults, and adapting this tool to the pediatric setting is one of the working lines of this European project.
Worldwide, about 21 million children need palliative care and more than 8 million children need specialised care during their illness and at the end of life. In Europe, around 170,000 children who need palliative care die each year without access to it.
Palliakid aims to improve the early identification of patients with complex palliative care needs by creating predictive models. These models will differentiate patients based on their level of complexity, allowing for timely, comprehensive and planned care. The project will strengthen the involvement of patients and their families, by developing tools for a more precise assessment of needs and expectations, facilitating interaction and involvement with the whole healthcare team. The project will focus on advance care planning, encouraging interaction between children, families, and healthcare teams throughout the course of the illness. Additionally, a digital support tool, known as the 'Patient Journey' platform, will be developed to enhance patient involvement and facilitate joint decision-making.
To start the Palliakid project, the Sant Joan de Déu Hospital is hosting a two-day event with nearly 50 experts from all over Europe. During these days, the 17 partners will present the objectives of the project and lay the foundations for this new collaboration.