The majority of children with cancer fortunately recover. Relatively speaking, is the proportion for whom this is not the case much smaller. However, the impact of such cases on a family is, of course, enormous. When a child has a life-threatening or life-shortening condition, they require palliative care. This includes not only children with cancer but also children with complex chronic conditions such as neonatal, neurological, or metabolic disorders. In the Netherlands, this applies to approximately 5,000 to 7,000 children.
To gain an overview of the characteristics of good palliative care and patient-related outcomes, quality indicators with the right measurable tools are needed. It is important to make the quality of pediatric palliative care measurable so that care centers can monitor their progress over time and can compare their results with other centers. This provides opportunities to further improve quality of care.
The aim of my PhD research is to develop these process, structure, and outcome indicators for pediatric palliative care together with an implementation plan. I will do this with input of patient representatives, parent/caregivers, and health care professionals of various (academic) hospitals.
In the end, all of this contributes to the most important goal: providing appropriate care and support to every child and their family.
Supervisors: Dr. Renée Mulder and Prof. Leontien Kremer