YIA21-001: A Modified Delphi Study to Refine Measures of End-of-Life Care Quality for Children with Cancer

Authors: Prasanna J. Ananth MD, MPH1,2, Sophia Mun MPH2, Noora Reffat MPH3, Soo Jung Kang MD, PhD4, Sarah Pitafi5, Xiaomei Ma PhD2,4, Cary P. Gross MD2, and Joanne Wolfe MD, MPH6,7,8
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  • 1 Department of Pediatrics, Yale School of Medicine, New Haven, CT
  • | 2 Yale Cancer Outcomes, Public Policy and Effectiveness Research (COPPER) Center, New Haven, CT
  • | 3 University of Chicago Medicine, Chicago, IL
  • | 4 Department of Chronic Disease Epidemiology, School of Public Health, Yale University, New Haven, CT
  • | 5 Yale University, New Haven, CT
  • | 6 Dana-Farber Cancer Institute, Boston, MA
  • | 7 Boston Children’s Hospital, Boston, MA
  • | 8 Harvard Medical School, Boston, MA

Background: There are no existing quality measures to define optimal end-of-life care (EOLC) for children with cancer, contributing to high healthcare utilization and variable palliative care provision. In a preceding study, we developed a set of 26 measures of EOLC quality. Our objective in the current study was to reach stakeholder consensus on which of these candidate quality measures to prioritize. Methods: We conducted an iterative cross-sectional electronic survey, using a modified Delphi method. We convened a stakeholder panel, including interdisciplinary healthcare professionals, bereaved parents, and family advocates. In each of two rounds of surveys, participants were asked to rate quality measures on a 9-point Likert scale, based on perceived importance. Healthcare professionals were additionally asked to rate each measure on perceived feasibility. After each round, we computed median ratings on importance and feasibility of measurement. Open-ended responses following Round 1 were summarized to identify new quality measures to include in Round 2. We retained quality measures that received a median score of ≥8 in importance. Results: Twenty-five participants completed both rounds of the survey. In Round 1, participants were asked to rate 26 candidate EOLC quality measures. Following Round 1, 9 quality measures were removed due to median importance scores <8. Six of the eliminated measures pertained to healthcare resource use. Two measures on advance care planning were then added in Round 2, based on participant comments. Following Round 2, 17 quality measures were ultimately retained [Table 1]. Quality measures related to symptom screening and receipt of palliative care consultation were rated highly, both in importance and feasibility. Quality measures related to communication were rated as highly important, yet less feasible. Measuring family members’ receipt of psychosocial or bereavement services, and whether a patient’s needs were heard by their healthcare team, were rated least feasible. Conclusions: We refined a candidate list of EOLC quality measures using the modified Delphi method. Childhood cancer stakeholders prioritized quality measures pertaining to patient-reported outcomes, deeming measures of healthcare resource use less important in this context. Future research should seek to implement these measures in real-world practice.

Table 1.

Median Ratings of End-of-Life Care Quality Measure

Table 1.

This work was funded by the NCCN Foundation®.

Corresponding Author: Prasanna J. Ananth, MD, MPH
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