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Published on: April 4, 2018
Developing an Educational Visual Tool to Support Families Considering Whole-Exome Sequencing in Japan
Kana Harada1, Mikiko Kaneko1, Shinji Kosugi2
1Department of Clinical Genetics, The Jikei University Hospital, Tokyo, Japan.
An animated video and booklet were created to help Japanese families understand whole-exome sequencing (WES) for pediatric genetic diagnostics. The educational tools were well-received, aiding comprehension and facilitating informed decision-making.
Area of Science:
- Genomic Medicine
- Pediatric Diagnostics
- Patient Education
Background:
- Whole-exome sequencing (WES) is a complex diagnostic tool in pediatric care.
- Families require accessible educational resources for informed decision-making regarding WES.
- This study addresses the need for WES educational materials in Japan.
Purpose of the Study:
- To develop and evaluate an animated educational video and booklet on WES for families in Japan.
- To support informed decision-making for children with suspected genetic conditions.
- To enhance understanding of WES in pediatric diagnostics.
Main Methods:
- Materials designed based on International Patient Decision Aid Standards and prior research.
- Alpha version reviewed by 31 clinical genetics professionals and patient advocates.
- Beta version evaluated by 23 parents of children with genetic disorders.
Main Results:
- Stakeholder feedback improved material accuracy, clarity, and structure.
- Parents found the video easy to understand, useful, and well-paced.
- The video was noted for its potential to facilitate clinical discussions.
Conclusions:
- First animated educational tool on WES developed in Japan.
- The video and booklet can improve family understanding and psychosocial dialogue in genetic counseling.
- Wider implementation may lead to more equitable communication about WES in pediatric settings.
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