Defining the Denominator for Measuring Quality of End-of-Life Care in Children with Cancer: Results of a Nominal Group Technique

Emily E Johnston; Raba Tefera; Prasanna Ananth; Isaac Martinez; Amy Porter; Jennifer M Snaman; Rachel Thienprayoon; Steve Asch; Smita Bhatia; Ronan O'Beirne

doi:10.1016/j.jpeds.2024.114038

Defining the Denominator for Measuring Quality of End-of-Life Care in Children with Cancer: Results of a Nominal Group Technique

J Pediatr. 2024 Mar 28:271:114038. doi: 10.1016/j.jpeds.2024.114038. Online ahead of print.

Authors

Affiliations

¹ Institute for Cancer Outcomes and Survivorship, Heersink School of Medicine, University of Alabama at Birmingham, Birmingham, AL; Pediatric Hematology/Oncology, Department of Pediatrics, Heersink School of Medicine, University of Alabama at Birmingham, Birmingham, AL. Electronic address: eejohnston@uabmc.edu.
² Institute for Cancer Outcomes and Survivorship, Heersink School of Medicine, University of Alabama at Birmingham, Birmingham, AL.
³ Department of Pediatrics, Yale School of Medicine, New Haven, CT; Yale Cancer Outcomes, Public Policy and Effectiveness Research (COPPER) Center, New Haven, CT.
⁴ Department of Pediatrics, Boston Children's Hospital and Dana-Farber Cancer Institute, Boston, MA.
⁵ Division of Palliative Care, Department of Anesthesia, Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH; Department of Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH.
⁶ Department of Medicine/Primary Care, School of Medicine, Stanford University, Stanford, CA.
⁷ Institute for Cancer Outcomes and Survivorship, Heersink School of Medicine, University of Alabama at Birmingham, Birmingham, AL; Pediatric Hematology/Oncology, Department of Pediatrics, Heersink School of Medicine, University of Alabama at Birmingham, Birmingham, AL.
⁸ Division of Continuing Medical Education, Heersink School of Medicine, University of Alabama at Birmingham, Birmingham, AL.

PMID: 38554745
DOI: 10.1016/j.jpeds.2024.114038

Abstract

Objective: To determine which groups of children with cancer for whom to apply the newly developed quality measures (QMs) for end-of-life (EOL) care.

Study design: In a series of nominal groups, panelists answered the question: "Which children, diagnoses, conditions, or prognoses should be included when examining the quality of EOL care for children with cancer?" In each group, individual panelists proposed answers to the question. After collating individual responses, each panelist ranked their 5 top answers and points were assigned (5 pts for the best answer, 4 pts the second best, etc.). A team of pediatric oncology and palliative care clinician-scientists developed and applied a coding structure for responses and associated themes and subthemes for responses.

Results: We conducted 5 nominal groups with a total of 44 participants. Most participants identified as female (88%) and non-Hispanic White (86%). Seventy-nine percent were clinicians, mainly in pediatric palliative care, pediatric oncology, or hospice; 40% were researchers and 12% were bereaved parents. Responses fell into 5 themes: (1) poor prognosis cancer; (2) specific treatment scenarios; (3) certain populations; (4) certain symptoms; and (5) specific utilization scenarios. Poor prognosis cancer and specific treatment scenarios received the most points (320 pts [49%] and 147 pts [23%], respectively).

Conclusions: Participants developed a framework to identify which children should be included in EOL QMs for children with cancer. The deliberate identification of the denominator for pediatric QMs serves as a potent tool for enhancing quality, conducting research, and developing clinical programs.

Keywords: Nominal Group technique; end-of-life care; pediatric oncology; pediatric palliative care; quality measures.