Curious about the progress of PALLIAKID? This European project focuses on improving paediatric palliative care.
Introduction to PALLIAKID
PALLIAKID is an interdisciplinary European project (Grant No. 101137169) launched in December 2023 and coordinated by Sant Joan de Déu (SJD, Barcelona, Spain). The consortium consists of 17 institutions across Europe, aiming to respond to unmet needs and gaps in paediatric palliative care (PPC) in the following areas:
- Early identification of young patients with palliative and end-of-life care needs
- Comprehensive assessment of the needs of patients, families, and healthcare professionals
- Comprehensive, personalised, interdisciplinary care plan, including advance care planning.
AI-Powered Early Detection System
PALLIAKID implements a multifaceted approach to these three areas, including an AI-powered early detection system (EDS) that leverages machine learning models trained on retrospective data from Hospital Sant Joan de Déu and clinically validated with prospective data from four clinical sites in Spain, Italy, Denmark, and Finland.
Defining and Validating Input and Outcome Variables
Through a collaborative approach involving the participating clinical sites and the project’s data and information technology partners, in May 2024, the consortium identified and defined a comprehensive set of input and outcome variables for the EDS algorithms, which were categorised into seven groups: 1) patient demographics, 2) diagnosis, 3) procedures, examinations, 4) treatment, 5) use of medical resources, and 6) clinical scales. The availability and structure of these variables were validated across the clinical sites, ensuring their technical feasibility for inclusion in the EDS. In the upcoming months, we plan to load the identified variables into the cloud infrastructure of Hospital Sant Joan de Déu, transform the data into a common data model and perform a correlation analysis to identify key variables and enhance model accuracy.
Enhancing Shared and Informed Decision-Making
In parallel, the project seeks to enhance shared and informed decision-making in PPC by adapting two pre-existing tools for needs assessment (HexCom) and advance care planning (IMPACT ACP) to different cultural and socio-ethical contexts among the paediatric population. In April 2024, a literature review on PPC needs was carried out, as well as interviews with healthcare professionals on their use of tools and criteria for needs assessment and advance care planning.
Co-Creation Sessions and Tool Adaptation
The tool adaptation process is also centred on co-creation sessions with patients, siblings, family caregivers, and healthcare professionals in the five clinical sites (in Spain, Italy, Denmark, and Finland). This spring, the co-creation protocol was collaboratively designed between all clinical sites and led by qualitative research experts in METROPOLIA (Finland). The protocol has now been submitted to the ethical committees of the participating sites and the first round of co-creation sessions are under way, with the Hospital Sant Joan de Déu leading the pilot sessions. PPC patients, siblings, family caregivers and healthcare professionals with direct experience in palliative care and/or chronic complex conditions are therefore currently participating in dynamic and interactive co-creation sessions on how they identify and evaluate needs and care planning synergies.
Future Plans and Upcoming Activities
A second round of co-creation is planned for October 2024, during which the participants will evaluate the modified version of the HexCom and IMPACT tools and their integration into a digital platform. A report on the results from across the five sites will be available later this fall, which we hope will be useful for real-world family-professional collaborations in Europe and beyond.
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