This study aimed to co-design, pilot nationally in an acute pediatric setting, and evaluate the real-world use of plain language genomic test reports. Eight plain language genomic test report templates were developed through co-design with patient groups, plain language experts, educators, and genetic health professionals. These were piloted and evaluated in a national pediatric ultra-rapid genomic testing program. Surveys of 154 families and 107 genetic health professionals showed high satisfaction with report layout, content, and language. Reports were widely shared with family members and other health professionals, and templates were adapted for other settings. Co-designed plain language genomic test reports facilitate patient/family and caregiver understanding and communication of genomic test results.

Gemma R. Brett, Aisha Ward, Sophie E. Bouffler, Elizabeth E. Palmer, Kirsten Boggs, Fiona Lynch, Amanda Springer, Amy Nisselle, Zornitsa Stark