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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

Perceived understanding of genomic testing results NYCKidSeq (novel); CSER (novel); CSER measure adapted from Psychological Adaptation to Genetic Information Scale (PAGIS) [35] X X
Objective understanding of genomic testing results NYCKidSeq (novel) X X
Understanding of medical follow up & actionability Adapted from CSER (novel): Recommended Medical Actions and Follow Through on Recommendations Attributable to Genomic Testing (MRA) X
Expectations of genetic testing Adapted from Patient Reported Utility (PrU) [36]; NYCKidSeq (novel) X
Satisfaction with results and communication mode CSER (novel) X
Patient assessment of communication CSER measure adapted from Patient Assessment of cancer Communication Experiences (PACE) [37, 38] X
Evaluation of communication tool (GUÍA) NYCKidSeq (novel) adapted from Lobb et al. 2006 [39) and Sanderson et al. 2016 [40] X
Satisfaction with interpretation and perceived cultural concordance (Spanish speakers only) CSER (novel) X
Evaluation of provided patient resources NYCKidSeq (novel) X
Perceived Utility
Patient reported utility CSER measure adapted from Patient Reported Utility (PrU) [36] X X
Psychological Impact
Feelings about genomic testing results CSER measure adapted from Feelings About Genomic Testing Results (FACToR) [41] X X
Uncertainty CSER measure adapted from Perceptions of Uncertainties in Genomic Sequencing (PUGS) [42] and FACToR subscale [41] X X
Decisional regret (for positive secondary findings only) Adapted from Decision Regret Scale [43] X X
Behavioral Impact
Information seeking CSER (novel) X X
Adherence to medical follow up recommendations; Patient-Initiated actions attributable to genomic testing CSER (novel): Recommended Medical Actions and Follow Through on Recommendations Attributable to Genomic Testing (MRA); Patient-Initiated Actions Attributable to Genomic Testing (PIA) X
Family communication CSER (novel) X
Social Impact
Access to care CSER measure adapted from Medicare Expenditure Panel Survey, Household Component (MEPS-HC) [44] X
Quality of life ascertainment (for child) Pediatric Quality of Life Inventory (PedsQL) Parent Proxy Generic Core [45]; Adapted from EuroQol-Visual Analog Scale (VAS) [46] X X
Economic Impact
Cost utility Adapted from Hebert et al. 2008 [47] and Valuation of Informal Care Questionnaire (iVICQ) [48] X X
Sociodemographic Factors
Health literacy; Subjective numeracy CSER measure adapted from BRIEF Health Literacy Survey [49]; CSER measure adapted from Subjective Numeracy Scale (SNS-3) [50] X
History of receiving genetic testing NYCKidSeq (novel) adapted from Genetic testing to Understand and Address Renal Disease Disparities (GUARDD) study [51] X
Trust in health care system CSER measure adapted from Health Care System Distrust Scale [52] X
Insurance status of child CSER measure adapted from National Health and Nutrition Examination Survey (NHANES) [53] X X
Child only: sex, grandparent(s) country of origin CSER measure adapted from GenIUSS [54], CSER (novel) X
Child and Parent: age, race/ethnicity, country of origin, zip code Date of birth, CSER measure adapted from US Census [55, 56], CSER (novel), Zip code X
Parent only: education level, language, income, household, marital status Education and language: CSER (novel)
Income and household: CSER measure adapted from NHANES [53]
Marital status: NYCKidSeq (novel)
  1. aNote: NYCKidSeq measures were developed specifically for the RCT. CSER measures were developed by a collaborative group of CSER investigators, as outlined in Goddard et al., 2020 [56]
  2. bBL Baseline survey
  3. cROR1 Return of results, visit 1 survey
  4. dROR2 Return of results, visit 2 survey