Adolescent Decision-Making Involvement in the Receipt of Genomic Testing Results - 22/08/23
Abstract |
Objective |
To examine hypothesized predictors of adolescent and parent involvement in the decision about which genomic results to receive.
Study design |
We conducted a longitudinal cohort study during phase 3 of the electronic Medical Records and Genomics (eMERGE) Network. Dyads reported on how they preferred to make choices (adolescent only, parent only, or jointly). Dyads used a decision tool to choose independently the categories of genetic testing results they wanted. We summarized independent choices, identifying initially discordant dyads. After a facilitated discussion, dyads made a joint decision. Dyads then completed the Decision-Making Involvement Scale (DMIS). We conducted bivariate correlations between DMIS subscale scores and the following hypothesized predictors: adolescent age, preference for adolescent to make their own decision, and discordance on initial independent choices.
Results |
The sample included 163 adolescents, aged 13-17 years and parents (86.5% mothers). Dyads lacked agreement on how they wanted to make the final decision (weighted kappa statistic 0.04; 95% CI –0.08 to 0.16). These preferences, as well as the adolescent’s age and adolescent–parent discordance on initial choices for specific categories of genetic testing results to receive, were associated with subsequent decision-making involvement behaviors as measured by DMIS subscales. Dyads with discordant initial preferences had significantly greater scores on the DMIS Joint/Options subscale than those with concordant initial preferences (adolescent report M [SD] 2.46 [0.60] vs 2.10 [0.68], P < .001).
Conclusions |
Through facilitated discussion, adolescents and parents can work together and reach agreement about receipt of genomic screening results.
Le texte complet de cet article est disponible en PDF.Keywords : decision-making involvement, genomic testing
Abbreviations : ACMG, DMIS
Plan
Vol 259
Article 113492- août 2023 Retour au numéroBienvenue sur EM-consulte, la référence des professionnels de santé.
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