RNPilotPatient education and counseling2021

A decision aid for additional findings in genomic sequencing: Development and pilot testing.

Amanda S Freed, Inga Gruß, Carmit K McMullen and 8 others

PMID 33191058

WHAT IT FOUND

Adults at cancer risk found a genomic sequencing decision aid relevant and understandable.

All 11 interviewees scored 11 or 12 on 12 comprehension questions. The pilot did not test whether the aid improves actual choices.

Key findings

01All interview participants found the decision aid content relevant and helpful.

02All interviewees scored 11 or 12 on the 12 comprehension questions.

03The interviewed sample was more educated and less diverse than the full CHARM study.

STILL TO COME

How it was doneWhat they foundWhat it means for RNs

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What it does not show

The usability interviews included 11 CHARM study participants and 2 patient advisory committee members, not low-literacy patients. The tool's accessibility for its intended audience was not directly tested. The interviewees were more educated and less diverse than the full CHARM study. The findings may not apply to patients with lower literacy. The comprehension assessment was completed after participants had already seen the decision aid by email. Only three participants were tested on the questions alone, so the high scores may not show what a new user would achieve. The paper reports development and pilot testing only. The randomized trial comparing the decision aid with web information was not reported, so it cannot show effects on choice, conflict, regret, or time.

Declared interests

The CHARM study was funded by NHGRI. The supplied text does not report author competing interests.

The easy way to misread this

Do not read this as evidence that the decision aid improves informed choices or reduces decisional conflict. It was pilot tested for acceptability and comprehension in 11 mostly highly educated participants, and the randomized trial was not reported here.

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