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Smart Pediatric Oncology Tracker of Symptoms (SPOTS), a Web-Based Interface for the Pediatric PRO-CTCAE: Development
Stacey Crane1, Deevakar Rogith2, Melody Hellsten3
1Cizik School of Nursing, The University of Texas Health Science Center at Houston, Houston, TX, United States.
Insights
Co-designing the Smart Pediatric Oncology Tracker of Symptoms (SPOTS) with children and caregivers improved symptom reporting. This novel digital tool enhances the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (Pediatric PRO-CTCAE).
Area of Science:
- Pediatric Oncology
- Health Informatics
- Human-Computer Interaction
Background:
- Cancer treatment in children causes toxicities impacting quality of life and adherence.
- Current symptom reporting relies on clinician interpretation, leading to incomplete data.
- The Pediatric PRO-CTCAE offers direct symptom reporting but has limitations in breadth of capture.
Purpose of the Study:
- To co-design and conduct usability testing of the Smart Pediatric Oncology Tracker of Symptoms (SPOTS).
- To create a web-based interface for the Pediatric PRO-CTCAE for comprehensive symptom reporting by pediatric cancer patients and caregivers.
Main Methods:
- Sequential co-design and usability testing phases involving child-caregiver dyads.
- Iterative prototype refinement based on child-computer interaction theory and participatory design.
- Usability testing with 12 dyads (children aged 7-17 and caregivers) using structured tasks and think-aloud protocols.
Main Results:
- SPOTS was rated as clear and easy to navigate, with valued visual design and customizable features.
- Usability challenges included confusing terminology and navigation issues.
- While tasks were mostly completed, some required excess steps; reporting methods varied by age and caregiver preference.
Conclusions:
- Co-designing pediatric health technologies with children and caregivers is feasible and valuable.
- SPOTS shows potential to improve Pediatric PRO-CTCAE implementation through an engaging, child-friendly digital format.
- Future work includes pilot studies on real-world usability, symptom capture quality, and clinical integration.
Background:
Children undergoing cancer treatment experience a range of treatment-related toxicities that significantly affect quality of life and adherence to therapy. Current methods for symptom reporting rely heavily on clinician interpretation of caregiver or child verbal reports, which can result in incomplete or inaccurate records. The Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (Pediatric PRO-CTCAE; National Cancer Institute) provides a validated mechanism for direct symptom reporting by children and caregivers, yet its traditional administration and preselection of questions limit the breadth of symptom capture.
Objective:
This research aimed to co-design and conduct formative usability testing of the Smart Pediatric Oncology Tracker of Symptoms (SPOTS), a novel, web-based interface for the Pediatric PRO-CTCAE to allow children with cancer and their caregivers to comprehensively report symptoms.
Methods:
The research comprised 2 sequential phases: co-design and usability testing. Guided by child-computer interaction theory and participatory design methods, child-caregiver dyads collaborated with the research team to iteratively design and refine the SPOTS prototype. Nine participant dyads engaged in up to 3 co-design sessions that informed system features, layout, and content. During the usability phase, 12 additional dyads (6 with children aged 7-12 years and 6 with adolescents aged 13-17 years, each with a caregiver) completed structured usability tasks using the SPOTS prototype. Task completion, pathway efficiency, and user feedback were recorded through screen capture, field notes, and think-aloud protocols. Quantitative data were analyzed descriptively, and qualitative feedback was analyzed thematically.
Results:
SPOTS was described by users as "very clear" and "easy to navigate." Participants valued the visual design, the use of a customizable character, and the opportunity for children to report symptoms independently. Key usability challenges included confusing terminology, navigation redundancy, and visual complexities. Quantitative task analyses indicated that while most structured tasks were completed successfully, many required excess steps or assistance. When not directed to use a specific screen, participants' symptom reporting methods varied, with caregivers and adolescents preferring the Body Parts Screen and younger children favoring the Search Screen.
Conclusions:
The formative development of SPOTS demonstrates the feasibility and value of co-designing pediatric health technologies directly with children and caregivers. SPOTS has the potential to enhance the implementation of the Pediatric PRO-CTCAE by offering an engaging, child-friendly digital format that facilitates more direct symptom reporting. Future work will include a pilot study to further assess real-world usability, the quality of symptom capture (ie, completeness and accuracy), and integration with clinical workflows.
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