A clear call to action exists to include the patient’s voice in oncology care.^1,2 The translation of this imperative is less clear when it comes to implementing patient-reported outcomes (PRO) into clinical care specifically for children with cancer. Many validated PRO measurement tools for both the pediatric patient’s and their caregivers, or proxy users, are available. However, in comparison to adult oncology, there are fewer clinical trials among children with cancer that meaningfully include PRO.

Translating clinical research into practical patient care is even more problematic. The decision whether to focus on only the patients’ voices versus the input of their caregivers (serving as proxies) remain a delicate issue. Mack et al found that when using the PROMIS measurement tool, caregivers tended to overestimate their child’s symptoms and underestimate their mobility.³ While the patient perspective is key, there are times or situations when the caregiver could or should serve as their voice through proxy reporting, as has been accomplished through the Ped-PRO-CTCAE.⁴

In this issue of Pediatric Blood & Cancer , Meryk et al. from the Medical University of Innsbruck, Austria describe their efforts to implement and act clinically on a daily patient-reported outcome measurement tool among children with cancer. The research team created a web-based child-friendly patient portal (ePROtect) to track daily patient reported outcomes. Among the twelve patients enrolled on their study they obtained 891 daily reports with a median completion rate of 85.3% for inpatient stays and 55.9% for outpatient stays. Importantly, the time to complete these measurements was less than one minute. Most participants, including both the patient and their proxy, provided a positive rating for usability measures including “ease of use and satisfaction,” “system informational arrangement,” and “usefulness.” The team responded to any reports of severe symptoms which occurred in 14.7% of time points. Interventions that were performed included extension of supportive care management and admission to the hospital. Meryk, et al were able to successfully implement a web-based PRO tool and enact clinical interventions among children across all aspects of the clinical healthcare continuum from scheduled inpatient admissions to outpatient stays to admission for unexpected outcomes.

The platform to collect the PRO is critically important. Mobile health (mHealth) technology tools appear to be a promising method in which to capture PRO. As seen in the Meryk study, mobile platforms are a feasible and acceptable manner in which to approach the collection of PRO by children with cancer. In a longitudinal study, Vettese et al had high utilization and positive usability for the Supportive care Prioritization, Assessment, and Recommendation for Kids (SPARK) web application to improve symptom control among children with cancer or pediatric hematopoietic stem cell transplant recipients.⁵ Others have utilized text messaging features where the responses from patients and family members are emailed to the clinical team.⁶

Despite these successes, there will continue to be barriers to translating PRO into clinical care in the world of pediatric oncology. These barriers tend to be organizational and less frequently due to user or intervention issues.⁷ As most clinicians would attest, available time and insufficient staff remain important factors to help navigate the gathering and converting of PRO into clinical care.⁸

In summary, the challenge to include patient-reported outcomes into clinical care remains complex. Incorporation of the patient’s voice will bring depth to our understanding of the journey our patients endure. This will require a balance of information gathering and evaluation. It is important that the tracking of PRO occur without overloading the patient or their caregiver with tasks. Also, it is imperative that we not providing too much information to the clinician who then may not focus on the symptom most concerning to the patient. Infrastructure changes and resource allocation will be required to merge our clinical duties with PRO measurements in order to truly achieve the Institute for Healthcare Improvement’s goal of understanding “What matters to you?”. This study by Meryk et al is an important step in the right direction of utilizing mHealth to capture, evaluate, and initiate clinical interventions to improve symptom management for children with cancer through their cancer experience.

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