Grant: Project Grant

Pediatric palliative care (PPC) developed in response to the need for improved pain, symptom and holistic care of children with life-threatening illnesses. However, better understanding is needed about children's symptoms and quality of life, parent distress, and goals of care and how these may be related to each other and impact on use of healthcare services and healthcare costs. As well, we need to better understand if the timing of involvement of a PPC team can help to reduce children's symptoms, parent distress, overall costs, and use of health services. We will complete 3 studies to answer the following questions: 1.What are the experiences of children who receive PPC in terms of their symptom burden, quality of life, goals of care, and healthcare use and costs, and parents' levels of distress? 2.What relationships exist between these components of the child and parent experience, and how are they related to healthcare use and costs over time? 3.How does timing of referral to PPC impact the child's symptoms and quality of life, parent distress and healthcare use and costs among patients who in other regards are similar? Children who have been referred to a participating PPC team and their families will be asked to take part in the study. We will collect information from children and parents about the child's symptoms, parent distress, and goals of care at the beginning of the study and then follow-up with the same questions at 2, 6, and 12 months. We will link this information with healthcare administrative data to examine the health services used by these children and the cost of services. Our study will help health professionals give better guidance to children and families about their symptoms and provide better support to families. The results will also have significant implications for health care policy and ultimately lead to better outcomes for children with life-threatening illnesses and their families.