Approximately one out of every four children with cancer will die. Palliative care for children is all-inclusive, family-centered, and compassionate care aimed at improving quality of life and attending to suffering for those with life-threatening illness. Palliative care addresses physical, psychosocial, and spiritual needs for the child and family. Children suffer when poor communication impedes access to palliative care early in the trajectory of life-threatening disease. The Institute of Medicine has called for research regarding new models of care delivery and ways to enhance communication about palliative and end-of-life issues for children with life-threatening illness. We have created an innovative initiative, the Pediatric Advanced Illness Care Coordination (PAICC) program, to provide a structured intervention program to improve palliative care coordination and access for children. PAICC is a comprehensive, life-enhancing communication-based approach to family-centered care for children with advanced, progressive, or poor prognosis malignant disease. The program consists of a series of flexible interventions provided to families by a trained Care Coordinator, accompanied by written materials for parents and providers. We will demonstrate with this R21 Research project that 1) delivery of the PAICC intervention will be feasible for children and families facing advanced cancer, medical staff, and Care Coordinators; 2) the PAICC intervention will improve advanced care planning for children with advanced cancer, and 3) the PAICC intervention will improve the process-of care for families of children with advanced cancer. This single institution pilot study in a busy pediatric oncology and stem cell transplant setting will lead directly to a multisite R01-funded study comparing the PAICC program with usual care for children with advanced cancer. Additional anticipated long-term results include a positive impact on the delivery of palliative care services to seriously ill children and their families, enhanced communication and improved processes of care such as child/parental participation in decision-making, enhanced parental self-efficacy, and improved quality of life at the end-of-life, all in a cost effective manner. Ultimately the PAICC approach will be generalizable to any child living with life-threatening illness.
