Periodic Reporting for period 1 - PALLIAKID (COMPREHENSIVE PAEDIATRIC PALLIATIVE CARE APPROACH)
Okres sprawozdawczy: 2023-12-01 do 2025-05-31
The EU-funded PALLIAKID project is focused on evaluating new interventions specifically designed for children, adolescents and young adults (AYAs) with serious life-limiting illnesses. The project’s main objective is to develop and evaluate innovative tools to improve the well-being and quality of life (QoL) of children and AYAs with palliative and end-of-life care needs, family caregivers and professionals. Novel solutions, such as the PALLIAKID Early Detection System (EDS) and the PALLIAKID intervention [which includes the PALLIAKID Needs Assessment HexComPed tool, PALLIAKID IMPACT Advance Care Planning (ACP) tool, and PALLIAKID Patient Digital Platform] and, the PALLIAKID XR-based capacity-building program for healthcare professionals, will be developed and evaluated in 5 clinical sites in 5 different healthcare systems across Europe.
During the first 18 months of the project, PALLIAKID has successfully progressed on its pathway to impact through designing and developing both the EDS study protocol and the PALLIAKID Intervention tools (HexComPed and IMPACT), protocol, and evaluation framework. Both studies will serve to enhance coordination and integration between pediatric palliative care (PPC) services and increase QoL for the different actors involved in PPC. The highly participatory PALLIAKID approach - through co-creation sessions, living labs, focus groups, interviews and training sessions, as well as public engagement activities to reach to audiences beyond the project - has successfully integrated the perspectives and lived experiences of patients, siblings, family caregivers, and healthcare professionals from different disciplines into the design of the PALLIAKID tools. These participatory actions have in turn helped patients and families feel more heard and included, while also breaking down stigmas and taboos that exist around PPC and end-of-life care. Most of all, the highly participatory nature of PALLIAKID ensures that the designed tools foster patient- and family-centered care which can be tailored and adapted to diverse cultural contexts, with enormous potential impact for the estimated 21 million children that require PPC globally, as well as their families.
During the first 18 months of the project, PALLIAKID has successfully progressed on its pathway to impact through designing and developing both the EDS study protocol and the PALLIAKID Intervention tools (HexComPed and IMPACT), protocol, and evaluation framework. Both studies will serve to enhance coordination and integration between pediatric palliative care (PPC) services and increase QoL for the different actors involved in PPC. The highly participatory PALLIAKID approach - through co-creation sessions, living labs, focus groups, interviews and training sessions, as well as public engagement activities to reach to audiences beyond the project - has successfully integrated the perspectives and lived experiences of patients, siblings, family caregivers, and healthcare professionals from different disciplines into the design of the PALLIAKID tools. These participatory actions have in turn helped patients and families feel more heard and included, while also breaking down stigmas and taboos that exist around PPC and end-of-life care. Most of all, the highly participatory nature of PALLIAKID ensures that the designed tools foster patient- and family-centered care which can be tailored and adapted to diverse cultural contexts, with enormous potential impact for the estimated 21 million children that require PPC globally, as well as their families.
• Compilation of a comprehensive list of input and output variables and definition of conceptual design for the development of the EDS algorithm.
• Identification of technical requirements to integrate the EDS and feasibility of different integration methods at each clinical site.
• Constitution of patients’, family caregivers’, siblings’ and healthcare professionals’ advisory boards.
• Development of the protocol and informed consent forms for co-creation and living lab activities.
• Implementation and analysis of co-creation and living lab sessions in all clinical sites.
• Development of the study protocols for the PALLIAKID EDS and PALLIAKID Intervention studies with input from all clinical partners and research experts and incorporation of feedback from patients’, family caregivers’ and siblings’ advisory boards.
• Development of the Evaluation Framework for the project’s feasibility studies, including a plan for evaluating the economic feasibility of the PALLIAKID EDS and the feasibility, effectiveness and cost-effectiveness of the PALLIAKID Intervention.
• Adaptation of the HexCom tool to pediatric populations and the IMPACT tool to the clinical sites through iterative processes both within the consortium and with external stakeholders (including an international survey for healthcare professionals and incorporating insights from co-creation sessions with patients, siblings, family caregivers, and local healthcare professionals).
• Demonstration of a highly refined prototype of the XR training application in PALLIAKID Living Lab sessions in all clinical sites.
• Identification of technical requirements to integrate the EDS and feasibility of different integration methods at each clinical site.
• Constitution of patients’, family caregivers’, siblings’ and healthcare professionals’ advisory boards.
• Development of the protocol and informed consent forms for co-creation and living lab activities.
• Implementation and analysis of co-creation and living lab sessions in all clinical sites.
• Development of the study protocols for the PALLIAKID EDS and PALLIAKID Intervention studies with input from all clinical partners and research experts and incorporation of feedback from patients’, family caregivers’ and siblings’ advisory boards.
• Development of the Evaluation Framework for the project’s feasibility studies, including a plan for evaluating the economic feasibility of the PALLIAKID EDS and the feasibility, effectiveness and cost-effectiveness of the PALLIAKID Intervention.
• Adaptation of the HexCom tool to pediatric populations and the IMPACT tool to the clinical sites through iterative processes both within the consortium and with external stakeholders (including an international survey for healthcare professionals and incorporating insights from co-creation sessions with patients, siblings, family caregivers, and local healthcare professionals).
• Demonstration of a highly refined prototype of the XR training application in PALLIAKID Living Lab sessions in all clinical sites.
The PALLIAKID project is ongoing, but has already achieved several key results, including adaptation of the HexCom needs assessment tool to the pediatric population and the adaptation of the PALLIAKID IMPACT ACP tool with special attention placed on how it can best be implemented in culturally diverse contexts, taking into account spiritual and values-based preferences of patients and families. In parallel, the identification of input/outcome variables and conceptual design of the algorithm for the EDS have finalized and the EDS study protocol is under development. In addition, the first version of the XR capacity building program has been completed and tested among interdisciplinary healthcare and hospital staff.