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Parent Priorities in End-of-Life Care for Children With Cancer.

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Bereaved parents prioritize their child's symptom management and goal-concordant end-of-life care. Measures focusing on parental psychosocial support or hospital resource use were less important for quality assessment.

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Area of Science:

  • Pediatric Oncology
  • Palliative Care
  • Health Services Research

Background:

  • Robust quality measures for pediatric cancer end-of-life care are lacking.
  • Previously, 28 candidate patient-centered quality measures were developed.

Purpose of the Study:

  • To prioritize quality measures from the perspective of parents who have lost a child to cancer.
  • Identify key attributes of high-quality end-of-life care in pediatric oncology.

Main Methods:

  • A cross-sectional survey using an electronic discrete choice experiment (DCE) was conducted.
  • 61 bereaved parents participated, rating the importance of 28 quality measures.
  • Hierarchical Bayesian multinomial logistic regression analyzed choices to derive importance scores.

Main Results:

  • The highest-priority measures for parents were symptom management, healthcare team responsiveness to child's needs, and goal-concordant end-of-life experiences.
  • Measures related to parental psychosocial support and intensive care unit (ICU) utilization were ranked lowest.
  • Symptom management was rated nine times more important than parental psychosocial support.

Conclusions:

  • Bereaved parents prioritize child-focused quality measures, particularly symptom management and goal-concordant care.
  • Quality measures assessing parental support and child's resource utilization were less valued.
  • Future research should focus on measuring care attributes most important to families facing pediatric advanced cancer.