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Updated: Sep 6, 2025

A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
Development of a Patient-Centered Preference Tool for Patients With Hematologic Malignancies: Protocol for a Mixed
Amy Cole1, Daniel R Richardson2, Karthik Adapa3
1Carolina Health Informatics Program, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States.
This study evaluates electronic prototypes for capturing patient preferences in cancer treatment decisions, comparing discrete choice experiments (DCE) and best-worst scaling (BWS) to improve shared decision-making tools.
Area of Science:
- Health Informatics
- Patient-Centered Care
- Decision Science
Background:
- Novel therapies for hematologic malignancies improve survival but complicate treatment choice alignment with patient preferences.
- Previous paper-based discrete choice experiment (DCE) and best-worst scaling (BWS) instruments were developed to quantify patient preferences.
- Informing shared decision-making requires understanding patient preferences for treatment outcomes.
Purpose of the Study:
- To develop an electronic health care tool (EHT) using DCE or BWS instruments to capture patient preferences for guiding clinical decisions.
- To evaluate the perceived usability, cognitive workload (CWL), and performance of electronic prototypes incorporating DCE and BWS instruments.
- To compare the usability, CWL, and performance of DCE versus BWS electronic prototypes.
Main Methods:
- Mixed methods study employing iterative co-design with healthy volunteers, patient-caregiver pairs, and health care workers.
- Qualitative data collection via think-aloud sessions and semistructured interviews for thematic analysis.
- Quantitative evaluation using validated assessments (PSSUQ, NASA-TLX, SEQ) for usability, CWL, and task performance (time, errors).
Main Results:
- Ethical approval obtained; DCE and BWS instruments integrated into the PRIME prototype (early-mid 2021).
- Heuristic evaluations completed (July 2021); recruitment for healthy volunteers (Aug-Sep 2021) and phase 3 (Jan-Sep 2022) underway.
- Phase 2 findings accepted for publication (Dec 2021); phase 3 data analysis expected completion (Nov 2022).
Conclusions:
- Findings will differentiate the usability, CWL, and performance of DCE and BWS electronic prototypes.
- Optimization of prototypes will lead to an EHT facilitating shared decision-making in clinical settings.
- Evaluation results will inform the development of clinically applicable EHTs for patients and healthcare providers.
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