Making BRCA1 genetic test reports easier to understand through user-centered design: A randomized trial
Gabriel Recchia1, Alice C E Lawrence1, Lauren Capacchione2
1Winton Centre for Risk and Evidence Communication, Department of Pure Mathematics and Mathematical Statistics, University of Cambridge, Cambridge, United Kingdom.
Summary
User-centered design improved patient understanding of BRCA genetic test results. This approach enhances communication of complex cancer risks, leading to better comprehension of genetic testing outcomes.
Area of Science:
- Genomic Medicine
- Health Communication
- Human-Computer Interaction
Background:
- Communicating complex genetic risks, such as those associated with BRCA mutations, poses a significant challenge in healthcare.
- Effective risk communication is crucial for informed decision-making regarding cancer screening and management.
Purpose of the Study:
- To apply a user-centered design process to develop improved methods for communicating BRCA genetic test results.
- To identify optimal phrases, graphics, and communication strategies for patient understanding of cancer risk and next steps.
Main Methods:
- A user-centered design process involving interviews with healthcare professionals and patients (N=42).
- A randomized experimental study (N=456) comparing user-centered reports with standard UK genomic laboratory reports.
- Outcome measures included subjective/objective comprehension, communication efficacy, actionability, and perceived risk.
Main Results:
- User-centered reports demonstrated higher subjective comprehension, communication efficacy, and actionability compared to standard reports.
- No significant difference in perceived risk was observed between the two report types.
- Participants viewing user-centered reports showed significantly better comprehension on specific items.
Conclusions:
- User-centered design is a valuable approach for creating patient-friendly materials regarding complex genetic risks.
- The study suggests specific wordings and communication strategies to enhance comprehension of BRCA-associated risks.
- Improved communication can empower patients in managing their cancer risk based on genetic testing results.
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