Background: Home-based cancer care offers new ways of delivering supportive therapies, including post-chemotherapy hydration, traditionally delivered in hospital settings. Understanding how programs are developed and how parents perceive managing care at home offers opportunities to improve services and experiences. Aim: To describe the implementation process and evaluation of a home intravenous hydration program for children with cancer and thus to provide practical information for future initiatives. Methods: Data were prospectively collected on clinical impact, safety indicators, and estimated costs; these were tabulated and analysed. Semi-structured interviews were undertaken with a subset of parents regarding their experience and analysed using content analysis. Results: Over 34 months, 21 children were eligible, and 16 parents were educated and assessed competent with providing home care. All 16 children received home hydration with a median of 5.5 days per child (IQR 6.65 days). This avoided 116 hospital bed-days and associated costs, at an estimated total value of USD $ 105,521, on average saving USD $ 910 per day and USD $ 6,596 per child. There were no adverse events reported, and no child required re-admission to hospital while receiving home hydration. Parents were overwhelmingly positive in their feedback about the program. Verbatim quotes were synthesized under one overarching theme—supporting normality promotes recovery. Conclusion: When adequately trained and well supported, parents highly value providing home-based care to their children. This offers opportunities to improve experiences and outcomes for children and families as well as reduce costs to health services, achieving clinical impact without reducing safety.
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.
Background Symptoms and associated distress in children diagnosed and treated for cancer are uniformly common, yet structured and systematic symptom monitoring is not yet commonplace. With increasing pressures on the healthcare workforce, improved systematic approaches to symptom management are required. Methods Medical, nursing and allied health oncology clinicians developed algorithms using consensus techniques to ascertain thresholds of concern for each symptom for the Symptom Screening in Pediatrics (SPPedi) tool, a Patient Reported Outcome Measure (PROM). Algorithm vetting and refinement were achieved through iterative interviews and consultation with clinicians. Self-management evidence-based recommendations for each symptom were developed. The algorithms were incorporated into an existing smartphone application (MyQCH), as part of the Oncology Hub, and an iterative evaluation is planned to test the feasibility, acceptability, safety, usefulness, and other domains including a hybrid effectiveness trial (ACTRN12621001084875). Discussion Digital solutions provide alternative options for communication, information, and education and opportunities to harness the best of community and hospital services. The Oncology Hub and RESPONSE system is a comprehensive approach to symptom management that includes a suite of tools and resources including a smartphone app that collects PROMs and delivers symptom management advice, as well as written resources for both the families of children with cancer and clinicians. Conclusions Using technology offers new ways to think about how clinicians and families communicate and share information. Understanding how information is exchanged using technology, and how this impacts clinical workflow is critical to successful implementation, and to ultimately optimise symptom assessment management in children with cancer.
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