Each year, an estimated 14,000 children and adolescents in Europe are diagnosed with cancer. Cancer treatments have improved so that most childhood cancer patients in Europe will become long-term survivors. However, around 20% of them cannot be cured and will die, many in hospital. Paediatric palliative care (PPC) encompasses care regardless of diagnosis or stage of disease, and focuses on the prevention and relief of suffering of paediatric patients and their informal caregivers. The value of PPC for children with life-threatening or life-limiting conditions is well-established in general, and for cancer specifically. Currently, care for children with cancer focuses primarily on disease treatment and symptom management, and specialised PPC is often not received. As a result, many children with cancer and their informal caregivers experience gaps in care, such as poor management of psychosocial and even physical symptoms, failures in communication, inadequate support for informal caregivers, and inconsistent bereavement follow-up.
In view of the known differences between European countries concerning the availability of PPC services, knowledge and experience in PPC and available resources, a Joint Action is the best way to facilitate the development of high quality PPC in all European countries, as countries with less knowledge or resources can take advantage of the experiences, knowledge and lessons learned in countries with more advanced PPC programmes. The overall aim of HOPE4Kids is to bring together relevant actors from across Member States and countries associated to the EU4Health programme to advance PPC in paediatric oncology. Activities across the action cover a Landscape Analysis of PPC in Europe, guideline development, pilots and education and training, as well as sustainability, focusing on six cross-cutting themes: Symptoms Treatment, Advance Care Planning, Shared-Decision Making, Psychosocial care, Pre-Loss and Bereavement Care and Models of Care.