Where there is no genetic counselor: An online decision-aid supports the majority of parents' diagnostic genomic testing choices for their children.

Autor:	Birch P; Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada; BC Children's Hospital Research Institute, Vancouver, BC, Canada., Beauchesne R; Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada., Bansback N; School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada., Boelman C; BC Children's Hospital Research Institute, Vancouver, BC, Canada; Division of Neurology, Department of Pediatrics, University of British Columbia, Vancouver, BC, Canada., Connolly M; BC Children's Hospital Research Institute, Vancouver, BC, Canada; Division of Neurology, Department of Pediatrics, University of British Columbia, Vancouver, BC, Canada., Demos M; BC Children's Hospital Research Institute, Vancouver, BC, Canada; Division of Neurology, Department of Pediatrics, University of British Columbia, Vancouver, BC, Canada., Friedman JM; Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada; BC Children's Hospital Research Institute, Vancouver, BC, Canada., Race S; BC Children's Hospital Research Institute, Vancouver, BC, Canada; Division of Biochemical Diseases, Department of Pediatrics, University of British Columbia, Vancouver, BC, Canada., Stockler S; BC Children's Hospital Research Institute, Vancouver, BC, Canada; Division of Biochemical Diseases, Department of Pediatrics, University of British Columbia, Vancouver, BC, Canada., Elliott AM; Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada; BC Children's Hospital Research Institute, Vancouver, BC, Canada; British Columbia Women's Hospital Research Institute, Vancouver, BC, Canada., Adam S; Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada; BC Children's Hospital Research Institute, Vancouver, BC, Canada. Electronic address: shelin.adam@ubc.ca.
Jazyk:	angličtina
Zdroj:	Genetics in medicine : official journal of the American College of Medical Genetics [Genet Med] 2024 Sep; Vol. 26 (9), pp. 101173. Date of Electronic Publication: 2024 May 31.
DOI:	10.1016/j.gim.2024.101173
Abstrakt:	Purpose: We evaluated DECIDE, an online pretest decision-support tool for diagnostic genomic testing, in nongenetics 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 6 of this group had residual questions. These 6, plus 16 with decisional conflict or insufficient knowledge, saw a GC. 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. Competing Interests: Conflict of Interest The authors declare no conflicts of interest. (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)
Databáze:	MEDLINE
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