Identifying patient‐centered outcomes for children with cancer and their caregivers when they seek care in the emergency department

Abstract

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...

Emergency department utilization and disposition outcomes by pediatric patients with cancer in Maryland and New York from 2013 to 2017

“…In order to protect these children from further risk of infection (i.e., from crowded ED lobbies), and facilitate early assessment and rapid triage, specific protocols need to be in place to isolate and evaluate these patients in a timely manner. 27 Caregivers often avoid bringing their children into a crowded ED, unless they perceive severe illness or if instructed by their primary care provider or oncologist. For minor issues, such as muscular injuries, caregivers would seek care on an outpatient basis, as opposed to non-immunocompromised patients who would be more likely to visit the ED for non-acute and non-serious medical issues.…”

“…However, ED visits have their own risks by exposing children to infectious agents that may have devastating consequences. In order to protect these children from further risk of infection (i.e., from crowded ED lobbies), and facilitate early assessment and rapid triage, specific protocols need to be in place to isolate and evaluate these patients in a timely manner 27 . Caregivers often avoid bringing their children into a crowded ED, unless they perceive severe illness or if instructed by their primary care provider or oncologist.…”

“Research Jam”: Engaging patients and other stakeholders through human-centered design to improve translational research

“…RJ has completed projects addressing various research challenges including identifying patient-centered outcomes [35,36], developing interventions [37,38], improving research study recruitment [39] and experience [40] to improve research outcomes, and communicating health information to the public [41].…”

Assessing Needs and Experiences of Preparing for Medical Emergencies Among Children With Cancer and Their Caregivers

“…4,5 Based on our clinical experience and recent study, we appreciate that children with cancer and their caregivers encounter many barriers to optimal care when preparing for and then seeking care in the ED. 6 First, most newly-diagnosed pediatric cancer patients were previously healthy and unlikely to have experienced serious medical issues. Consequently, caregivers may be unfamiliar with navigating the healthcare system, especially when medical emergencies arise.…”

“…7,8,9 Our previous evaluation of important outcomes to children with cancer and their caregivers when they seek care in the ED revealed that they desired a way in which to improve their sense of preparedness. 6 One way in which we believed we could support caregivers in their need to feel more prepared for when medical emergencies arise is through a mobile health (mHealth) technology tool. A mHealth tool could enable caregivers to become more efficient, effective, safer, and less stressed while managing their childrens' care.…”