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

Author:

Ananth Prasanna12ORCID,Mun Sophia2ORCID,Reffat Noora2,Kang Soo Jung2ORCID,Pitafi Sarah2,Ma Xiaomei23,Gross Cary P.24ORCID,Wolfe Joanne567

Affiliation:

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. Department of Chronic Disease Epidemiology, Yale School of Public Health, New Haven, CT

4. Department of Internal Medicine, Yale School of Medicine, New Haven, CT

5. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA

6. Department of Pediatrics, Boston Children's Hospital, Boston, MA

7. Harvard Medical School, Boston, MA

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.

Publisher

American Society of Clinical Oncology (ASCO)

Subject

Oncology (nursing),Health Policy,Oncology

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