"Better at home": Mixed methods report of intricacies in pediatric febrile neutropenia management.

INTRODUCTION: Many febrile neutropenia (FN) episodes are low risk (LR) for severe outcomes and can safely receive less aggressive management and early hospital discharge. Validated risk tools are recommended by the Children's Oncology Group to identify LR FN episodes. However, the complex dynamics of early hospital discharge and burdens faced by caregivers associated with the FN episode have been inadequately described. METHODS: An adapted quality-of-life (QoL) survey instrument was administered by a convergent mixed methods design; qualitative and quantitative data from two sources, the medical record and the mixed methods survey instrument, were independently analyzed prior to linkage and integration. Code book was informed by conceptual framework; open coding was used. Mixed methods analysis used joint display of results to determine meta-inferences. RESULTS: Twenty-eight patient-caregiver dyads participated with a response rate of 87%. Of the 27 FN episodes, 51.8% (14/27) were LR and 40.7% (11/27) had an early hospital discharge. The LR and early hospital discharge groups had higher mean QoL scores comparatively. Meta-inferences are reciprocal influencers and expand the complex situation; FN negatively affects the entire family, and the benefits of hospital management were outweighed by risks and worsened symptoms, so an individualized approach to management and care at home was preferred. CONCLUSION: Early discharge of LR FN episodes positively impacts QoL, yet risk-stratified management for FN is intricately complex. Optimal FN management should prioritize the patient's overall health; shared decision-making is recommended and can improve care delivery. These results should be confirmed in a larger, more heterogeneous population.

A pilot intervention of using a mobile health app (ONC Roadmap) to enhance health-related quality of life in family caregivers of pediatric patients with cancer.

Background: The Roadmap mobile health (mHealth) app was developed to provide health-related quality of life (HRQOL) support for family caregivers of patients with cancer. Methods: Eligibility included: family caregivers (age ≥18 years) who self-reported as the primary caregiver of their pediatric patient with cancer; patients (age ≥5 years) who were receiving cancer care at the University of Michigan. Feasibility was calculated as the percentage of caregivers who logged into ONC Roadmap and engaged with it at least twice weekly for at least 50% of the 120-day study duration. Feasibility and acceptability was also assessed through a Feasibility and Acceptability questionnaire and the Mobile App Rating Scale to specifically assess app-quality. Exploratory analyses were also conducted to assess HRQOL self- or parent proxy assessments and physiological data capture. Results: Between September 2020-September 2021, 100 participants (or 50 caregiver-patient dyads) consented and enrolled in the ONC Roadmap study for 120-days. Feasibility of the study was met, wherein the majority of caregivers (N=32; 65%) logged into ONC Roadmap and engaged with it at least twice weekly for at least 50% of the study duration (defined a priori in the Protocol). The Feasibility and Acceptability questionnaire responses indicated that the study was feasible and acceptable with the majority (>50%) reporting Agree or Strongly Agree with positive Net Favorability [(Agree + Strongly Agree) - (Disagree + Totally Disagree)] in each of the domains (e.g., Fitbit use, ONC Roadmap use, completing longitudinal assessments, engaging in similar future study, study expectations). Improvements were seen across the majority of the mental HRQOL domains across all groups; even though underpowered, there were significant improvements in caregiver-specific aspects of HRQOL and anxiety and in depression and fatigue for children (ages 8-17 years), and a trend toward improvement in depression for children ages 8-17 years and in fatigue for adult patients. Conclusions: This study supports that mHealth technology may be a promising platform to provide HRQOL support for caregivers of pediatric patients with cancer. Importantly, the findings suggest that the study protocol was feasible, and participants were favorable to participate in future studies of this intervention alongside routine cancer care delivery.