Care at Your Fingertips: Codesign, Development, and Evaluation of the Oncology Hub App for Remote Symptom Management in Pediatric Oncology.

PURPOSE: To codesign, develop, and evaluate a smartphone app that includes patient-reported measures of symptoms and real-time advice in children's cancer. METHODS: The Oncology Hub is a comprehensive approach to symptom management that includes a suite of codesigned tools and resources including clinical algorithms to determine the level of concern, symptom management advice, and resources for families of children with cancer. The evaluation involved Think Aloud interviews with parent and adolescent patients to complete tasks in the app as well as a User Experience questionnaire (score range, 0-120) and qualitative feedback. The accuracy of algorithms was determined by repeated testing of inputs and outputs over 4 weeks. RESULTS: Design and wireframes were iteratively refined through consultation with parents and adolescents confirming the final design. Beta testing evaluation was then completed by 25 participants including two adolescents. Across all participants, 84% of tasks were easy to navigate, and the Oncology Hub demonstrated high usability, usefulness, and acceptability with participants' scores ranging between 90 and 120 (mean = 112.2, standard deviation = 9.43). Qualitative feedback was positive. Testing of algorithms identified inconsistencies in understanding between clinical research and coding teams; refinements were made until the expected response notifications were returned with 100% accuracy. CONCLUSION: Technology offers new ways to think about how clinicians and families communicate and share information to harness the best of community and hospital services. Understanding how information is exchanged using health apps, and how this affects clinical workflow is critical to successful implementation, and optimizing symptom assessment and management in children with cancer.

The Oncology Family Forum: Collaborating With Families to Codesign Pediatric Oncology Services.

The Oncology Services Group at Queensland Children's Hospital established an Oncology Family Forum in 2018 to enable codesign of service improvements. A total of 26 family members attended the first 4 Forums, with between 12 and 15 attendees at each. Attendees represented a range of diagnoses, were 85% female, 85% resided within 40 km of the tertiary center, and 26% were on-treatment. In a survey of attendees, 83% agreed that the Forum had improved families' service experience and 92% supported the codesign partnership and the exploration of their suggestions. A small proportion (25%) of attendees disagreed that there was enough time to share, 17% disagreed that all their questions were answered, and 17% disagreed that the Forum represented views of regional families. Respondents identified collaboration, improving understanding and communication as positive aspects of the Forums. Forums will continue to be offered regularly, augmented by videoconferencing (particularly during the COVID-19 pandemic), written responses to family questions and special interest discussion groups. The new collaborations and programs that have been initiated, codesigned, and progressed through these Forums will continue to be the focus of service delivery and quality improvements.

The Oncology Family App: Providing Information and Support for Families Caring for Their Child With Cancer.

The Oncology Family App supports families across the vast state of Queensland, Australia, with easy access to vital information, including management plans for a deteriorating child, patient specific information and other resources. This article describes the development and evaluation of this mobile app. The app was developed and tested in collaboration with parents, caregivers, and clinicians and released in November 2015. This first version featured "Statewide Hospital Contacts," including phone numbers, links to Google maps, and 24-hour emergency contacts with click to call functionality; "When to Call" describing symptoms to look out for in a deteriorating child; "Blood Results Table"; and "Information" listing recommended websites, health care team contacts, appointments, and notes. The app was evaluated through interviews with parents, caregivers and patients and download metrics. Six months after the app release, 68% of the 38 parents and caregivers surveyed had downloaded the app. The most used modules were "Blood Results Table," "When to Call," and "Statewide Hospital Contacts," but families reported using all features available. Families were enthusiastic about the support the app provided and gave useful feedback to direct future development. Using mobile health technology to support families is a novel, but rapidly growing concept. Family and caregiver feedback showed that the Oncology Family App was an efficient and convenient way to provide much needed information. A new version of the app is under development and evaluation of outcomes will be ongoing.