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Table 2 NYCKidSeq participant outcomes by survey timepoint

From: Correction to: The NYCKidSeq project: study protocol for a randomized controlled trial incorporating genomics into the clinical care of diverse New York City children

Variable Source BL1 ROR12 ROR23
Primary outcome
Perceived understanding of genomic testing results NYCKidSeq developed measure (novel) X X
Secondary outcomes
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
Attitudes
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
Perceived utility
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
Psychological impact
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
Behavioral impact
Information seeking CSER developed measure (novel); Adapted from Psychological Adaptation to Genetic Information Scale [53] X X
Family communication CSER developed measure (novel) X
Social impact
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
Economic impact
Cost/value CSER developed measure (novel) X X
Healthcare utilization Self-reported Utilization of Health Care Services [59] X X
Sociodemographic factors
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  
  1. 1BL = baseline survey
  2. 2ROR1 = return of results, visit 1 survey
  3. 3ROR2 = return of results, visit 2 survey