Summary
This project aims to develop and prioritize family-centered quality measures for end-of-life care (EOLC) for children with cancer, utilizing natural language processing and a new questionnaire to assess care quality.
The Pediatric Advanced Cancer Experience (PACE): Measuring Quality of End-of-Life Care for Children with Cancer
US · IL
NIH
grant
awarded
#nih-5K08CA259222-05
What they want
The overall objectives 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 include: (1) establishing a priority list of EOLC quality measures from the perspective of parents of children with cancer; (2) characterizing EOLC process measures for children who died of cancer using natural language processing in electronic health records; and (3) developing and piloting the "Pediatric Advanced Cancer Experience" (PACE) questionnaire to prospectively appraise care quality for children with advanced cancer. The long-term goal is to build a platform for systematically measuring, reporting, and incentivizing high quality EOLC in children with cancer.
Deliverables
- Priority list of EOLC quality measures from parents' perspective
- Characterization of EOLC process measures using natural language processing in electronic health records
- Developed and piloted "Pediatric Advanced Cancer Experience" (PACE) questionnaire
- Foundation for multi-center, multi-modal evaluation of end-of-life care quality in children with cancer
Technical requirements
- Natural language processing (NLP) in electronic health records
- Questionnaire design and validation
Key personnel
- Dr. Ananth (lead researcher)
- Mentorship team with expertise in patient-reported outcomes, artificial intelligence-based techniques, and pediatric palliative care investigation
- Scientific advisory committee
