Table 2 NYCKidSeq participant outcomes by survey timepoint

 Perceived understanding of genomic testing results

NYCKidSeq developed measure (novel)

–

X

X

 Objective understanding of genomic testing results

NYCKidSeq developed measure (novel)

–

X

X

 Medical actions and non-medical/patient-initiated actions attributable to genomic testing

CSER developed measures (novel): Attributable to Genomic Testing (RMA) and Patient-Initiated Actions Attributable to Genomic Testing (PIA)

–

–

X

 Satisfaction with the mode of delivery

CSER developed measure (novel) adapted from Patient Assessment of cancer Communication Experiences (PACE) [34, 35]

–

X

–

 Satisfaction with results

Satisfaction with information about medicine (SIMS) [36]

–

X

–

 Attitudes toward genetic testing

Adapted from Genetic testing to Understand and Address Renal Disease Disparities (GUARDD) study [37, 38]

X

X

X

 Empowerment

Adapted from GUARDD study [37]

X

X

X

 Decisional conflict

Decisional Conflict Scale (Low Literacy) [39]

X

X

X

 Impact of genomic testing on health status

Functional status II-R (child) [40]

X

–

X

 Impact of genomic testing on quality of life

Child Health Utility Instrument (CHU9D; parent as proxy) [41]; SF-12 health survey (for parent) [42]

X

–

X

 Clinical utility

Patient-reported utility (PrU) [43]

–

X

X

 Feelings about genomic testing results

Feelings About Genomic Testing Results (FACToR) [44]

–

X

X

 Uncertainty

Perceptions of Uncertainties in Genomic Sequencing (PUGS) [45]; FACToR subscale [44]

–

X

X

 Depression

8-item Patient Health Questionnaire depression scale (PHQ-8) [46]

X

X

X

 Anxiety

Generalized Anxiety Disorder Screener (GAD-2) [47, 48]

X

X

X

 Perceived stress

Perceived Stress Scale 4-item (PSS-4) [49]

X

X

X

 Self-efficacy

Decision Self-Efficacy Scale [50]

X

–

–

 Patient activation

Short Form Patient Activation Measure (PAM) [51]

X

–

–

 Decisional regret

Decision Regret Scale [52]

–

X

X

 Information seeking

CSER developed measure (novel); Adapted from Psychological Adaptation to Genetic Information Scale [53]

–

X

X

 Family communication

CSER developed measure (novel)

–

–

X

 Support

Low-Literacy Decisional Conflict Scale (Q6 and Q8) [54]

X

X

X

 Access to care

CSER developed measure (novel)

X

X

X

 Life chaos

Chaos Scale [55]

X

–

–

 Family and community

Medical Outcomes Study Social Support Survey (mMOS-SS) [56]

X

–

–

 Quality of life ascertainment (for child)

PedsQL Parent Proxy Generic Core [57]; EuroQol-Visual Analog Scale (VAS) [58]

X

–

X

 Cost/value

CSER developed measure (novel)

–

X

X

 Healthcare utilization

Self-reported Utilization of Health Care Services [59]

–

X

X

 Literacy; numeracy

BRIEF Health Literacy Survey [60]; Subjective Numeracy Scale (SNS-3) [61]

X

–

–

 History of receiving genetic testing

Adapted from the GUARDD study [37]

X

–

–

 Trust in healthcare system

CSER developed measure (novel) adapted from Health Care System Distrust Scale [62]

X

–

–

 Health beliefs

Brief Illness Perception Questionnaire (IPQ) [63]

X

–

–

 Child and parent: sex, age, race/ethnicity, country of origin, language, insurance status, residential history, zip code

CSER developed measure (novel); Adapted from HCHS/SOL Personal Information Questionnaire [64]

X

–

–

 Parent only: education level, employment, income, household, marital status

CSER developed measure (novel); Adapted from HCHS/SOL Personal Information Questionnaire [64]

X

–

–

 Grandparents of child: residential history

Adapted from HCHS/SOL Personal Information Questionnaire [64]

X

–