Despite an 80% chance of cure, cancer remains the leading cause of death by disease in childhood. Improving survival is the ultimate goal, but we must also ensure the best possible care and quality of life for those children who cannot be cured. Children with advanced cancer have high symptom burden, with an average of 11 symptoms in the last week of life. Watching one's child suffer and managing caregiving demands can lead to significant physical strain (e.g., poor sleep, fatigue) and distress in parents. Parent perceptions of their child's suffering and quality of life can also influence goals of care and treatment decisions. Despite novel tools to facilitate discussions about advance directives, we still know little about how parents consider their child's views when managing care and making decisions as a family.
Our long-term goal is to reduce suffering in families of children with cancer. The objective of this study is to characterize symptom burden, quality of life, goals of care and family outcomes among 75 children (ages 5-17) with advanced cancer. Data will be collected from children, mothers and fathers at enrollment, six months and 12 months. Results will provide a new and detailed understanding of the experience of families of children with advanced cancer. In line with ALSF's mission, this study will also have a significant positive impact by addressing an urgent need and catalyzing evidence-based care to promote resilience in families of seriously ill children.
Co-Investigators: Lisa Humphrey, MD and Randal Olshefski, MD