Background: Children with cancer have high utilization of the emergency department (ED), but little is known about which outcomes are most important to them and their caregivers when they seek care in the ED.Procedure: A qualitative evaluation of ED experience for children with cancer and their caregivers was performed using self-reported interactive toolkits. Eligible participants included children with cancer (ages 11-19) and caregivers of children with cancer whose child received cancer therapy within the last year and had an ED visit within the last 2 years. Eligible participants received toolkits by mail and received incentives if they completed the toolkit. Toolkits were transcribed, thematically coded, and iteratively analyzed using Nvivo 11.0 software.Results: There were 26 toolkits received-seven by children aged 11-17 years and 19 by caregivers (11 with children aged 2-7 years, eight with children aged 11-17 years). About half were from within 1 h of their treating institution. The most important outcomes to this population included system-level issues (eg, cleanliness of space, timeliness of evaluation) and oncologyprovider-and ED-provider-level issues (eg, ability to access port-a-caths, quality of communication). Participants also identified outcomes that were within the control of the patient/caregiver, such as improving their sense of preparedness.
Conclusion:The important outcomes to children with cancer and their caregivers when they seek care in the ED are distinct from current quality metrics. Future research should focus on the development and validation of a patient-centered outcomes tool. K E Y W O R D S outcomes research, pediatric oncology, support care 1 INTRODUCTION Children with cancer have high utilization of the emergency department (ED), with up to half seeking ED services during their therapy. 1,2 Among those with ED visits, 58% had four or more visits in the year after diagnosis. 3 Importantly, children with cancer have a wide range of urgent medical needs, from fevers in the setting of neutropenia, to pneumonia, to seizures. 2,4 Yet, only about half of patients who seek Abbreviations: ED, emergency department; IU, Indiana University; PCO, patient-centered outcome. ED care require admission. 2,4,5 Most children with cancer are treated at tertiary care hospitals but live closer to community-based hospitals where they are often seen for urgent needs. In a study on oncology providers' triaging practices, providers reported recommending patients travel further if they believed the local ED's ability to access a port-a-cath (port) and evaluation timeliness were "Poor" to "Fair." 6 This study highlights the need to evaluate the ED experience at both tertiary care and community EDs. when they seek ED services. Historically, researchers relied on clinician-determined outcomes (eg, length of stay, laboratory values, etc.) to decide how the delivery of care could be improved. 7-13 While traditional measures are imperative, patients and caregivers are arguably the most authoritative source i...