Adolescent and parent perspectives on medical decision-making for chronic illness.

David, Jennie; Lo, Mindy S.; Langer, David A.

doi:10.1037/fsh0000297

Cited by 12 publications

(10 citation statements)

References 7 publications

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“…33 In decisional conflict. 35 Working toward reducing decisional conflict is important, as clinically significant decisional conflict if not resolved can translate into decisional regret, decisional delay and higher anxiety. 32,36 In our study, both parents and adolescents scored the highest decisional conflict for the values clarity subscale.…”

Section: Discussionmentioning

confidence: 99%

“…Adolescents between the ages 13 and 17 are on a developmental trajectory toward full autonomy and can gradually start taking ownership of their health by becoming primary partners in medical decision‐making . In fact, engaging adolescents in medical decision‐making has been shown to be associated with lower decisional conflict . Working toward reducing decisional conflict is important, as clinically significant decisional conflict if not resolved can translate into decisional regret, decisional delay and higher anxiety …”

Section: Discussionmentioning

confidence: 99%

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Decisional conflict among adolescents and parents making decisions about genomic sequencing results

et al. 2019

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Genomic testing of adolescents is increasing yet engaging them in decision-making is not routine. We assessed decisional conflict in adolescents and a parent making independent decisions about actual genomic testing results and factors that influenced their choices. We enrolled 163 dyads consisting of an adolescent (13-17 years) not selected based on a specific clinical indication and one parent. After independently choosing categories of conditions to learn for the adolescent, participants completed the validated Decisional Conflict Scale and a survey assessing factors influencing their respective choices. Adolescents had higher decisional conflict scores than parents (15.6 [IQR:4.7-25.6] vs 9.4 [IQR:1.6-21.9]; P = .0007). Adolescents with clinically significant decisional conflict were less likely to choose to learn all results than adolescents with lower decisional conflict (19.6% vs 80.4%; P < .0001) and less likely to report their choices were influenced by actionability of results (33.3% vs 18.9%; P = .044) and feeling confident they can deal with the results (71.2% vs 91.9%; P = .0005). Our findings suggest higher decisional conflict in adolescents may influence the type and amount of genomic results they wish to learn. Additional research assessing decisional conflict and factors influencing testing choices among adolescents in clinical settings are required. recommended by the ACMG while others may offer to return genomic screening results specific to study aims. 9,[11][12][13] Offering large amounts of genomic information to participants can make decisionmaking about which results to learn increasingly complex. When faced with such a complex decision, individuals may experience decisional conflict, which is a "personal uncertainty about which course of action to take when choice among competing options involves risk, regret or challenge to personal life values." 14 Making decisions about learning genomic information can be particularly challenging for asymptomatic minors -especially if they are offered the option to learn about carrier status or adult onset conditions that are not actionable in childhood. Concerns about learning carrier results or adult-onset conditions include psychosocial harms such as undue loss of autonomy and privacy; stress, anxiety and stigmatization. 15,16 However, benefits also include being aware of treatment and screening options, not being blindsided by a diagnosis at a later age, and the ability to make informed reproductive decisions and prompt life changes. 17 Literature focusing on the return of secondary genomic results has mainly focused on understanding the preferences of adults and parents with children who are at risk of or previously diagnosed with a genetic condition. 16,18,19 Adolescents' preferences about secondary findings and factors that influence their decisions to learn genomic information have largely been unexplored. In addition, most studies have involved hypothetical return of secondary findings and may not accurately depict preferences of the participa...

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Decisional conflict among adolescents and parents making decisions about genomic sequencing results

et al. 2019

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“…Decisional conflict was assessed with a widely-used 17item scale, which includes sub-scales assessing decision quality related to feeling informed, feeling one's decision is consistent with one's values, experiencing an acceptable degree of uncertainty around the decision, feeling supported, and feeling effective in one's decision-making (test-retest reliability coefficient = 0.81; α = 0.78-0.92) (O'Connor, 1995). General self-efficacy was assessed using a short-form, 6-item scale (α = 0.79-0.88) (Brignardello-Petersen, 2017; David et al, 2018;Raghuram Pillai et al, 2020;Romppel et al 2013). Lastly, the survey included previously used questions regarding risk perception (Tong et al, 2015), and seven novel items regarding previously hearing of WES, ability to cope with receiving a PF or SF, and acceptability of returning SF in a research setting.…”

Section: Instrumentationmentioning

confidence: 99%

Exome sequencing study in a clinical research setting finds general acceptance of study returning secondary genomic findings with little decisional conflict

Similuk

Yan

Setzer

et al. 2020

Journal of Genetic Counseling

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The return of individual genetic results from clinical research varies considerably by study (Wynn et al., 2015). This variability is partly dependent on study context, such as the relationship between investigator and participant, available resources, institutional norms, and investigator preference (Jarvik et al., 2014). For example, a genomic research study where physicians provide individual medical recommendations or administer treatment to participants has different ethical obligations than a research study doing genomic analysis on samples from de-identified biobank participants. One area without consensus is the return of secondary findings (SF) in a research setting (Wolf et al., 2015). Return of a selected consensus set of SF is recommended in the clinical setting by the American College of Medical Genetics and Genomics (ACMG) (Green et al., 2013;Kalia et al., 2017).One way to inform policy on the return of SF in the research setting is to conduct research on patient knowledge and preferences.In one study conducted at the National Institutes of Health (NIH) Clinical Center (CC), where the current study was also conducted,

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“…Adolescents with more health consciousness had parents who were more health conscious, and these adolescents were more likely to value independent involvement in their own care. 13 In a group of young adults aged 17 to 19 years with familial hypercholesterolemia, all of the young adults endorsed some level of parental involvement in their medical decision-making. 14 Both parents and young adults noted that "recognizing oneself as a decision-maker and navigating emerging independence" were critical tasks in the transition to adult care.…”

Section: Potential Conflict Of Interestmentioning

confidence: 99%

Parents and Adolescents: What’s the Right Mix in Obesity Treatment?

Hassink

2020

Pediatrics

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Adolescent and parent perspectives on medical decision-making for chronic illness.

Cited by 12 publications

References 7 publications

Decisional conflict among adolescents and parents making decisions about genomic sequencing results

Decisional conflict among adolescents and parents making decisions about genomic sequencing results

Exome sequencing study in a clinical research setting finds general acceptance of study returning secondary genomic findings with little decisional conflict

Parents and Adolescents: What’s the Right Mix in Obesity Treatment?

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