Genet Med. 2024 May 30:101173. doi: 10.1016/j.gim.2024.101173. Online ahead of print.
ABSTRACT
PURPOSE: We evaluated DECIDE, an online pre-test decision-support tool for diagnostic genomic testing, in non-genetics specialty clinics where there are no genetic counselors (GCs).
METHODS: Families of children offered genomic testing were eligible to participate. Fifty-six parents/guardians completed DECIDE at home, at their convenience. DECIDE includes an integrated knowledge quiz and decisional conflict screen. Six months later, parents were offered follow-up questionnaires and interviews about their experiences.
RESULTS: Forty parents (71%) had sufficient knowledge and no decisional conflict surrounding their testing decision but six of this group had residual questions. These six, plus 16 with decisional conflict or insufficient knowledge, saw a genetic counselor. At follow-up, little-to-no decisional regret and few negative emotions were identified in any parents. Most chose testing and described their decision as easy, yet stressful, and described many motivations for sequencing. Parents appreciated the simple comprehensive information DECIDE provided and the ability to view it in a low stress environment.
CONCLUSION: DECIDE provides adequate decision-support to enable most parents to make value-consistent choices about genetic testing for their child. Parents reported that DECIDE helped to clarify motivations for pursuing (or declining) testing. DECIDE is a timely, well tested, and accessible tool in clinical settings without GCs.
PMID:38828700 | DOI:10.1016/j.gim.2024.101173
