The majority of caregivers of children with cancer use mobile technology with minimal barriers; future research should focus on designing an mHealth tool to address the medical management needs by caregivers of children with cancer.

Children with cancer have high emergency department (ED) utilization, but little is known about their chief complaints. A retrospective chart review of ED chief complaints for children with cancer (actively receiving therapy) at Riley Hospital for Children from January 2014 to December 2015 was performed. Proportions of visits and disposition for top 5 chief complaints were determined. Multivariate logistic regression analyzed factors associated with admission. There were 598 encounters by 231 children with cancer. About half (49%) had >1 complaint. The 5 most common primary chief complaints were: fever (60.2%), pain (6.5%), nausea/vomiting (5.0%), bleeding (3.9%), and abnormal laboratory values (3.3%). Admission rates varied, with the highest rates being for nausea/vomiting (66.7%). Risk factors for admission were: hospitalization in prior 4 weeks (odds ratio [OR], 2.67; confidence interval [CI], 1.77-4.02), chief complaint of fever (OR, 1.90; CI, 1.16-3.09). For each increase in number of chief complaints, odds increased by 1.45 (CI, 1.14-1.83). Black, non-Hispanic (OR, 0.44; CI, 0.22-0.88) as compared with white, non-Hispanic, younger age (OR, 0.53; CI, 0.29-0.99) or complaint of abnormal laboratory values (OR, 0.20; CI, 0.06-0.68) had lower odds of admission. Children with cancer present to the ED with multiple and varied complaints. Future interventions could aim to improve caregiver anticipatory guidance and ED visit preparedness.

Background Caregivers face new challenges and tasks when their child is diagnosed with cancer, which can be overwhelming. Mobile technology has the capacity to provide immediate support at their fingertips to aid in tracking symptoms, managing medication, and planning for emergencies. Objective The objective of this study is to engage directly with end users and proxies to co-design and create a mobile technology app to support caregivers in the medical management of their child with cancer. Methods We engaged directly with caregivers of children with cancer and pediatric oncology nurse coordinators (proxy end users) to co-design and create the prototype of the Cope 360 mobile health app. Alpha testing was accomplished by walking the users through a series of predetermined tasks that encompassed all aspects of the app including tracking symptoms, managing medications, and planning or practicing for a medical emergency that required seeking care in the emergency department. Evaluation was accomplished through recorded semistructured interviews and quantitative surveys to capture demographic information and measure the system usability score. Interviews were transcribed and analyzed iteratively using NVivo (version 12; QSR International). Results This study included 8 caregivers (aged 33-50 years) of children with cancer, with most children receiving chemotherapy, and 6 nurse coordinators, with 3 (50%) of them having 11 to 20 years of nursing experience. The mean system usability score given by caregivers was 89.4 (95% CI 80-98.8). Results were grouped by app function assessed with focus on specific attributes that were well received and those that required refinement. The major issues requiring refinement included clarity in the medical information and terminology, improvement in design of tasks, tracking of symptoms including adjusting the look and feel of certain buttons, and changing the visual graph used to monitor symptoms to include date anchors. Conclusions The Cope 360 app was well received by caregivers of children with cancer but requires further refinement for clarity and visual representation. After refinement, testing among caregivers in a real-world environment is needed to finalize the Cope 360 app before its implementation in a randomized controlled trial.

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...

BACKGROUND: Caregivers of children with cancer can experience stress when seeking care in the emergency department. We sought to assess how caregivers prepare for and manage a medical emergency that arises in the community setting. PROCEDURE:A qualitative evaluation of emergency department (ED) visit preparations taken by children with cancer and their caregivers using self-reported interactive toolkits. Eligible participants included children with cancer (age 11 -21) currently receiving therapy for a cancer diagnosis with an ED visit (besides initial diagnosis) within the previous 2 months and caregivers of same. Participants received a paper toolkit, which were structured as experience maps with several generative activities. Toolkits were transcribed, thematically coded, and iteratively analyzed using NVivo 12.0 software. RESULTS:A total of 25 toolkits were received (7 children, 18 caregivers), with about threequarters of participants living greater than 1 hour from the treating institution. Several important common themes and areas for improvement emerged. Themes included struggles with decisionmaking regarding when and where to seek ED care, preparing to go to the ED, waiting during the ED visit, repetition of information to multiple providers, accessing of ports, and provider-toprovider and provider-to-caregiver/patient communication.