PiCaSSo is a digital platform to improve Pediatric Palliative Care in Portugal. It will offer a clinical data registry, advanced analytics, and a user-friendly interface for healthcare professionals to track, analyze, and coordinate pediatric palliative care for children with complex chronic diseases. The platform will support care planning and network creation through secure, centralized data.
Understanding the healthcare landscape and challenges in pediatric palliative care
In 2018, WHO estimated 21 million children needed pediatric palliative care annually, with Europe and North/Central America accounting for 9% of global needs. Only 5.7% of countries have adequate pediatric palliative care services.
Portugal advanced from pediatric palliative care level 1 (2013) to level 4 (2018), showing significant progress in training and service planning for the estimated 7,828 children needing pediatric palliative care.
The PaPaS Scale helps identify children aged 1-19 with complex chronic diseases and palliative needs for early referral. Its Portuguese version has been recently validated.
Portuguese hospitals are classified from level I to III. Better coordination between hospitals could improve efficiency and care quality across all levels.
Hospital de Santa Maria leads a multicenter study to classify pediatric palliative care needs across Portugal, improving national organization and developing a care network.
The platform will reduce fragmentation, enable better home support, and ensure timely referrals to improve quality of life for children and families.
The PiCaSSo project (refª 2024.07300.IACDC) is strategically planned as an 11-month intensive initiative with a total budget of €98,266.79, funded by Fundação para a Ciência e Tecnologia, ensuring comprehensive development and implementation of the digital platform to revolutionize pediatric palliative care across Portugal's healthcare network.