Refining Patient-Centered Measures of End-of-Life Care Quality for Children With Cancer

Abstract

PURPOSE: There are no existing quality measures (QMs) to optimize end-of-life care for children with cancer. Previously, we developed a set of 26 candidate QMs. Our primary objective in this study was to achieve stakeholder consensus on priority measures. METHODS: We conducted an iterative, cross-sectional electronic survey, using a modified Delphi method to build consensus among clinician and family stakeholders. In each of the two rounds of surveys, stakeholders were asked to rate QMs on a 9-point Likert scale, on the basis of perceived importance. Health care professionals were additionally asked to rate measures on perceived feasibility. After each round, we computed median scores on importance and feasibility of measurement, retaining QMs with median importance scores ≥ 8. RESULTS: Twenty-five participants completed both rounds of the survey. In round 1, participants were asked to rate 26 QMs; nine QMs, including QMs pertaining to health care use, were removed because of median importance scores < 8. Two new measures were proposed for consideration in round 2, on the basis of participant feedback. Following round 2, 17 QMs were ultimately retained. QMs related to symptom screening and palliative care consultation were rated highly in importance and feasibility. QMs related to communication were rated highly important, yet less feasible. Measuring whether a patient's needs were heard by their health care team was rated among the least feasible. CONCLUSION: Childhood cancer stakeholders prioritized QMs pertaining to patient-reported outcomes, deeming measures of health care resource use less important. Future research should seek to develop novel tools for quality assessment to enhance feasibility of implementing priority measures.

End‐of‐life care quality for children with cancer who receive palliative care

“…We and colleagues in the field previously generated candidate end‐of‐life care quality measures for children with cancer 8,9,14 . In the current study, we sought to evaluate the proportion of children with cancer who, in the last 30 days of life, avoided inpatient chemotherapy, mechanical ventilation, intensive care unit admission, and > 1 hospital admission.…”

“…We and colleagues in the field previously generated candidate end-oflife care quality measures for children with cancer. 8,9,14 In the current study, we sought to evaluate the proportion of children with cancer who, in the last 30 days of life, avoided inpatient chemotherapy, mechanical ventilation, intensive care unit admission, and > 1 hospital admission. We also assessed the proportion of children who were enrolled in hospice prior to death and/or reported ≤ 2 highly distressing symptoms at the time the last SHARE survey was completed.…”

“…We previously explored stakeholder perspectives on what constitutes high-quality end-of-life care for children with cancer, arriving at potential quality measures to assess care. 8,9 In the current study, we sought to implement a subset of these quality measures in a multicenter pediatric palliative care (PPC) database that uniquely integrates administrative data with patient-reported outcomes. Our objectives were to assess characteristics of end-of-life care for childhood cancer decedents who received PPC; examine the proportion of patients who met each of six quality measures; and explore patient characteristics associated with achieving high-quality end-of-life care.…”

“…We previously explored stakeholder perspectives on what constitutes high‐quality end‐of‐life care for children with cancer, arriving at potential quality measures to assess care 8,9 . In the current study, we sought to implement a subset of these quality measures in a multi‐center pediatric palliative care (PPC) database that uniquely integrates administrative data with patient‐reported outcomes.…”

Quality measures in end‐of‐life care among pediatric cancer patients: A lever for optimizing comfort and improving equity

“…previously evaluated stakeholder perspectives of quality EOL care in children with cancer and proposed corresponding quality metrics. These metrics prioritize minimizing intensive interventions and bothersome symptoms, and optimize goal‐concordant location of death, supportive care, and hospital policies and programs that facilitate family needs both at EOL and in bereavement 4–7 . These proposed metrics have not yet been broadly applied or evaluated on their performance.…”