The Pediatric Advanced Cancer Experience (PACE): Measuring Quality of End-of-Life Care for Children with Cancer

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PROJECT SUMMARY Although cure rates for childhood cancer have increased over several decades, cancer remains the leading cause of non-accidental death in children. Yet, there are no existing quality measures to define optimal end-of- life care (EOLC) for children with cancer. A lack of standards for EOLC contributes to high healthcare utilization for children with advanced, incurable cancer, as well as widely variable palliative care provision. For adults with cancer, high quality EOLC is defined at least in part by measures to reduce use of intensive healthcare resources, such as avoidance of hospital stays in the last weeks of life and prompt referral to hospice. In contrast, attributes of high quality EOLC for children with cancer have not been previously elucidated. To address this gap in knowledge, the overall objectives of this proposal are to prioritize family-centered quality measures for EOLC and to pioneer complementary approaches to assess care quality for children with advanced cancer. Specific aims are to: (1) establish a priority list of EOLC quality measures, from the perspective of parents of children with cancer; (2) characterize EOLC process measures for children who died of cancer, using natural language processing in electronic health records; and (3) develop and pilot the “Pediatric Advanced Cancer Experience” (PACE) questionnaire to prospectively appraise care quality for children with advanced cancer. Completion of these aims will lay the foundation for the first multi-center, multi- modal evaluation of end-of-life care quality in children with cancer. The long term goal of Dr. Ananth’s research program is to build a platform for systematically measuring, reporting, and incentivizing high quality EOLC in children with cancer, facilitating goal-concordant care delivery. Through the proposed research, Dr. Ananth seeks to advance the science of measuring EOLC quality in childhood cancer. Dr. Ananth is supported by an outstanding mentorship team and scientific advisory committee, with substantial expertise spanning patient- reported outcomes, artificial intelligence-based techniques for research, and pediatric palliative care investigation. Dr. Ananth will pursue formal training in patient-centered quality measurement, natural language processing, and questionnaire design and validation, concurrently building skills in leadership of a multi-center consortium. Collectively, the research in this proposal and career development plan will amply prepare her for an independent career focused on enhancing quality of care for children with advanced, incurable cancer.