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

Abstract

QUESTION ASKED: There are no existing quality measures (QMs) to define optimal end-of-life care for children with cancer. Previously, we developed a set of 26 candidate QMs. Our primary objective in the current study was to achieve stakeholder consensus on priority measures. SUMMARY ANSWER: Childhood cancer stakeholders prioritized QMs pertaining to patient-reported outcomes , deeming measures of health care resource use less important. WHAT WE DID: 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. WHAT WE FOUND: We refined a list of 26 candidate QMs for end-of-life care in children with cancer, using an expert panel to rate measures on importance and feasibility, ultimately retaining 17 QMs in this consensus-building process. Notably, QMs pertaining to restricted use of hospital resources and intensive interventions, albeit feasible to assess, were eliminated because of low perceived importance. QMs regarding physical symptom screening and receipt of palliative care consultation were rated highly, both in importance and feasibility. However, most other measures perceived to be highly important, including measures in the domains of interdisciplinary care, communication , and meeting patient preferences, were also rated least feasible. BIAS, CONFOUNDING FACTOR(S): Although we recruited a diverse sample of participants from various regions of the United States and with varied backgrounds, participants were predominantly women physicians of non-Hispanic White race or ethnicity, which may contribute to some element of response bias. REAL-LIFE IMPLICATIONS: Study findings substantiate patient-and family-centered approaches to measuring attributes of key importance for children with advanced cancer. Future research should seek to develop novel tools for quality assessment to enhance feasibility of implementing priority measures. 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.