Facilitating Comprehensive Self and Proxy Symptom Assessments for Children with Cancer

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Project Summary / Abstract Children with cancer suffer with symptoms related to their diagnosis and to cancer-directed therapies; symptoms that are frequently poorly recognized and may be under-treated by clinicians. When symptoms persist or become severe, they can lead to dose-reductions and even premature discontinuation of cancer- directed therapies, which, in turn, can affect treatment efficacy and survivorship. The first step to improving symptom management is to develop a better method for assessing and tracking symptoms. The Pediatric Patient Reported Outcome Common Terminology Criteria for Adverse Events (Pediatric PRO-CTCAE) is an innovative, recently developed tool that includes 130 questions related to 62 different symptoms and is completed by children and/or parents. Current use of the Pediatric PRO-CTCAE involves clinicians / researchers pre-selecting which symptoms are asked about, based on anticipated relevance. However, this approach prevents children/parents from reporting every symptom, risking symptoms being missed. Smart Pediatric Oncology Tracker of Symptoms (SPOTS) is an innovative, web-based interface that the applicant is developing that allows children and parents to systematically complete the Pediatric PRO-CTCAE, but without requiring responses to all 130 questions. The overall objective of this research is to refine and pilot test SPOTS for comprehensive self/proxy symptom assessment with children with cancer. The underlying rationale is that comprehensive symptom assessment and tracking will provide the data needed to identify symptom trends, facilitate surveillance for drug toxicities, and enhance symptom management. The specific aims of this mixed methods research are to: Phase 1. Conduct usability testing and refinement of the preliminary SPOTS prototype and SPOTS symptom reports. Aim 1A. Evaluate the usability of the SPOTS prototype for children with cancer and their parents at one timepoint (i.e. how usable and satisfying SPOTS is to use). Aim 1B. Evaluate the formatting of SPOTS symptom reports per children’s, parents’, and pediatric oncology clinicians’ preferences. Phase 2. Conduct longitudinal pilot testing of SPOTS (after Phase 1 refinement). Aim 2A. Evaluate the feasibility of children/parents using SPOTS to report the child’s symptoms over time. Aim 2B. Evaluate the usability of SPOTS for children with cancer and their parents to report the child’s symptoms over time (i.e. how usable and satisfying SPOTS is to use). Aim 2C. Evaluate the degree of agreement in Pediatric PRO-CTCAE core symptom reports 1) when children/parents use SPOTS versus the current survey format to report symptoms, and 2) between child versus parent symptom reports. The applicant’s goal is to become an independent nurse scientist capable of leading multisite, interdisciplinary research focused on improving symptom assessment for children with cancer. Thus, this K23 includes training in consumer health informatics research, advanced statistical analysis, pediatric oncology self/proxy symptom assessments, and developing and managing complex, pediatric clinical trials and interventions.