Reducing Parental Uncertainty Around Childhood Cancer: Implementation Decisions and Design Trade-Offs in Developing an Electronic Health Record-Linked Mobile App

Abstract

BackgroundParents of children newly diagnosed with cancer are confronted with multiple stressors that place them at risk for significant psychological distress. One strategy that has been shown to help reduce uncertainty is the provision of basic information; however, families of newly diagnosed cancer patients are often bombarded with educational material. Technology has the potential to help families manage their informational needs and move towards normalization.ObjectiveThe aim of this study was to create a mobile app that pulls together data from both the electronic health record (EHR) and vetted external information resources to provide tailored information to parents of newly diagnosed children as one method to reduce the uncertainty around their child’s illness. This app was developed to be used by families in a National Institutes of Health (NIH)-funded randomized controlled trial (RCT) aimed at decreasing uncertainty and the subsequent psychological distress.MethodsA 2-phase qualitative study was conducted to elicit the features and content of the mobile app based on the needs and experience of parents of children newly diagnosed with cancer and their providers. Example functions include the ability to view laboratory results, look up appointments, and to access educational material. Educational material was obtained from databases maintained by the National Cancer Institute (NCI) as well as from groups like the Children’s Oncology Group (COG) and care teams within Cincinnati Children’s Hospital Medical Center (CCHMC). The use of EHR-based Web services was explored to allow data like laboratory results to be retrieved in real-time.ResultsThe ethnographic design process resulted in a framework that divided the content of the mobile app into the following 4 sections: (1) information about the patient’s current treatment and other data from the EHR; (2) educational background material; (3) a calendar to view upcoming appointments at their medical center; and (4) a section where participants in the RCT document the study data. Integration with the NCI databases was straightforward; however, accessing the EHR Web services posed a challenge, though the roadblocks were not technical in nature. The lack of a formal, end-to-end institutional process for requesting Web service access and a mechanism to shepherd the request through all stages of implementation proved to be the biggest barrier.ConclusionsWe successfully deployed a mobile app with a custom user interface that can integrate with the EHR to retrieve laboratory results and appointment information using vendor-provided Web services. Developers should expect to face hurdles when integrating with the EHR, but many of them can be addressed with frequent communication and thorough documentation. Executive sponsorship is also a key factor for success.Trial RegistrationClinicalTrials.gov NCT02505165; https://clinicaltrials.gov/ct2/show/NCT02505165 (Archived by WebCite at http://www.Webcitation.org/6r9ZSUgoT)

Children's Oncology Group KidsCare smartphone application for parents of children with cancer

“…This strategy has been similarly used in other apps to successfully gauge end-user needs early in the project. 19,37,38 We also found that engagement of both parents and clinicians in the alpha and beta testing phases provided critical feedback for app design. Parents indicated a strong preference for displaying emergency contact information on the app's "home" screen, moving navigation buttons to the bottom of the screen, and developing a one-touch dialing function that would allow parents to quickly place a call in an urgent situation.…”

“…We found that engaging a SAB that included both parents and clinicians resulted in valuable feedback during the design phase, and led to early design changes (e.g., addition of journaling and appointment tracking features) instrumental in increasing user engagement. This strategy has been similarly used in other apps to successfully gauge end‐user needs early in the project 19,37,38 …”