Genomic testing for children with interstitial and diffuse lung disease (chILD): parent satisfaction, understanding and health-related quality of life.

Lauren KeladaClaire WakefieldNada VidicDavid S ArmstrongBruce BennettsKirsten BoggsJohn ChristodoulouJoanne HarrisonGladys HoNitin KapurSuzanna Lindsey-TempleTim McDonaldDavid MowatAndré SchultzHiran SelvaduraiAndrew TaiAdam Jaffe

Published in: BMJ open respiratory research (2022)

Understanding of genomic testing, satisfaction with information and participation and decisional regret are inter-related. Pretest consultations are important and can allow researchers to explain confidentiality of data and the variable turnaround times for receiving a test result. Staff can also update parents when there will be delays to receiving a result.

Keyphrases

copy number
young adults
mental health
physical activity
electronic health record
low grade
big data
general practice
primary care
health information
gene expression
machine learning