The PALLIAKID consortium launches a survey aimed at healthcare professionals who care for children with palliative care needs
Its objective is to understand how professionals assess the current and future needs and strengths of children with terminal illnesses and their families
The PALLIAKID consortium has designed an electronic survey aimed at healthcare professionals who care for children with palliative or end-of-life care needs. The goal of the questionnaire is to gain insight into how professionals assess the current and future needs and strengths of children with terminal illnesses and their families.
To ensure appropriate pediatric palliative care, healthcare providers and the tools they use must be sensitive to intercultural differences and variations across healthcare settings and adapted to pediatric populations.
It is estimated that around 21 million children worldwide need palliative care, and more than 8 million require specialized care during their illness and at the end of life. In Europe, approximately 170,000 children who need palliative care die each year without having access to it.
PALLIAKID Project
PALLIAKID aims to improve the early identification of patients with complex palliative care needs through the creation of predictive models. These models will differentiate patients based on their level of complexity, allowing for rapid, comprehensive, and planned assistance.
The project will strengthen the involvement of patients and their families, with the intention of developing tools for a more accurate assessment of needs and expectations, facilitating interaction and engagement with the entire healthcare team. The project will focus on advance care planning, promoting interaction between children and their families with healthcare teams throughout the illness. Additionally, a digital support platform, known as the ‘Patient Journey’ platform, will be developed to improve patient engagement and facilitate shared decision-making.
The Survey
The survey can be completed in less than twenty minutes. All data collected and processed are anonymous and confidential. Responses will be stored in a password-protected database at Erasmus University Medical Center in Rotterdam, the Netherlands, and will not be shared with anyone outside the PALLIAKID team. At the end of the study, an anonymized summary of the results will be made publicly available to all participants.
