Abstract
Clinical use of genome-wide sequencing (GWS) requires pre-test genetic counseling, but the availability of genetic counseling is limited. We developed an interactive online decision-support tool, DECIDE, to make genetic counseling, patient education, and decision support more readily available. We performed a non-inferiority trial comparing DECIDE to standard genetic counseling to assess the clinical value of DECIDE for pre-GWS counseling. One hundred and six parents considering GWS for their children with epilepsy were randomized to conventional genetic counseling or DECIDE. Following the intervention, we measured parents’ knowledge and empowerment and asked their opinions about using DECIDE. Both DECIDE and conventional genetic counseling significantly increased parents’ knowledge, with no difference between groups. Empowerment also increased but by less than 2% in each group. Parents liked using DECIDE and found it useful; 81% would recommend it to others; 49% wished to use it along with a genetic counselor; 26% of parents preferred to see a genetic counselor; 7% preferred DECIDE alone; and 18% had no preference. DECIDE appears equivalent to genetic counseling at conveying information. In addition, it was highly acceptable to the majority of study participants, many of whom indicated that it was useful to their decision-making. Use of DECIDE as a pre-test tool may extend genetic counseling resources.
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Funding
This research was performed as part of the study “Paediatric Epilepsy: Using Genomics to Improve Patient Care and Outcomes,” that was supported by the Canada Excellence Research Chair (MF) and the Alva Foundation (MC). The DECIDE research was funded by a Canadian Institutes of Health Research grant to JMF and a Canadian Institutes of Health Research New Investigator award to NB.
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Concept or design of the study: Shelin Adam, Patricia Birch, Jan Friedman.
Acquisition, analysis or interpretation of data for the study, and drafting or critical revision of the article for important intellectual content, and agreement to be accountable for all aspects of the article in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved, and final approval of the paper: Shelin Adam, Patricia Birch, Rachel Coe, Nick Bansback, Adrian Jones, Mary Connolly, Michelle Demos, Eric Toyota, Matthew Farrer, and Jan Friedman.
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Shelin Adam, Patricia Birch, Rachel Coe, Nick Bansback, Adrian Jones, Mary Connolly, Michelle Demos, Eric Toyota, Matthew Farrer, and Jan Friedman declare that they have no conflict of interest.
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All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.
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Adam, S., Birch, P.H., Coe, R.R. et al. Assessing an Interactive Online Tool to Support Parents’ Genomic Testing Decisions. J Genet Counsel (2018). https://doi.org/10.1007/s10897-018-0281-1
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DOI: https://doi.org/10.1007/s10897-018-0281-1