Evaluating parents’ decisions about next-generation sequencing for their child in the NC NEXUS (North Carolina Newborn Exome Sequencing for Universal Screening) study: a randomized controlled trial protocol

Table 3 Timing and measures

Measure	Citation	Scale information	Time 1 (pre-decision baseline, phase 1)	Time 2 (post-decision, phase 1 or 2^a)	Time 2A (post-additional information decision,^bphase 2)	Time 3 (short-term follow-up)	Time 4 (long-term follow-up)
Sociodemographic variables			X
Health literacy	[32]	1 item Likert scale	X
Personal and family history of genetic testing		5 items Yes/no	X
Knowledge of genomic sequencing	[38]	19 items True/ false	X	X		X
Understanding NC NEXUS		5 items True/false	X
General depression and anxiety	[43]	14 items Likert scales	X			X	X
Decisional conflict	[44]	16 items Likert scale		X	X
Decision regret	[45]	5 items Likert scale				X	X
Decision regret for additional information^c	Adapted from [45]	6 items Likert scale				X	X
Dyadic decision-making conflict		9 items Likert scale				X	X
Test-related distress	[46]	17 items Likert scale				X	X

^aThe time 2 questionnaire is administered in phase 1 for participants who decline NGS-NBS in the decision aid and in phase 2 for those who indicate interest in NGS-NBS in the decision aid by selecting accept or undecided
^bThis questionnaire is completed by decision arm participants after they decide to learn all, some, or none of the three categories of additional information
^c Relevant to decision arm participants only

ISSN: 1745-6215