Patient Experience of Complex Genomic Sequencing Exploring Patient Preference, Barriers, and Enablers for Delivery.

Kortnye Smith Sophie O'Haire Benjamin Markman Hui Kong Gan Kenneth J O'Byrne Michael Millward Ben Tran Benjamin J Solomon Clare L ScottDamien KeeGrant A McArthur Andrew P Fellowes Dong Anh K Khoung-Quang Paul G Ekert Paul A James Huiling Xu Melissa MartynElly LynchRona WeerasuriyaClara L Gaff Stephen B Fox Jayesh Desai

Published in: JCO precision oncology (2024)

Patients undergoing CGS are generally satisfied and place value on its use beyond potential therapeutic benefit. Our results suggest that to improve test utility and delivery of CGS with value to patients and investing institutions, focus must be placed on addressing the additional barriers to its wider implications including efforts to improve process efficiencies, clinician genomic literacy, and decision-making support.

Keyphrases

patients undergoing
end stage renal disease
decision making
ejection fraction
chronic kidney disease
newly diagnosed
copy number
prognostic factors
case report
single cell
gene expression
patient reported outcomes
genome wide
social media
patient reported