Skip to main content

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

SOURCEa

BLb

ROR1c

ROR2d

Understanding

Perceived understanding of genomic testing results

NYCKidSeq (novel); CSER (novel); CSER measure adapted from Psychological Adaptation to Genetic Information Scale (PAGIS) [34]

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

Attitudes

Expectations of genetic testing

Adapted from Patient Reported Utility (PrU) [35]; 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) [36, 37]

X

Evaluation of communication tool (GUÍA)

NYCKidSeq (novel) adapted from Lobb et al. 2006 [38) and Sanderson et al. 2016 [39]

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) [35]

X

X

Psychological Impact

Feelings about genomic testing results

CSER measure adapted from Feelings About Genomic Testing Results (FACToR) [40]

X

X

Uncertainty

CSER measure adapted from Perceptions of Uncertainties in Genomic Sequencing (PUGS) [41] and FACToR subscale [40]

X

X

Decisional regret (for positive secondary findings only)

Adapted from Decision Regret Scale [42]

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) [43]

X

Quality of life ascertainment (for child)

Pediatric Quality of Life Inventory (PedsQL) Parent Proxy Generic Core [44]; Adapted from EuroQol-Visual Analog Scale (VAS) [45]

X

X

Economic Impact

Cost utility

Adapted from Hebert et al. 2008 [46] and Valuation of Informal Care Questionnaire (iVICQ) [47]

X

X

Sociodemographic Factors

Health literacy; Subjective numeracy

CSER measure adapted from BRIEF Health Literacy Survey [48]; CSER measure adapted from Subjective Numeracy Scale (SNS-3) [49]

X

History of receiving genetic testing

NYCKidSeq (novel) adapted from Genetic testing to Understand and Address Renal Disease Disparities (GUARDD) study [50]

X

Trust in health care system

CSER measure adapted from Health Care System Distrust Scale [51]

X

Insurance status of child

CSER measure adapted from National Health and Nutrition Examination Survey (NHANES) [52]

X

X

Child only: sex, grandparent(s) country of origin

CSER measure adapted from GenIUSS [53], CSER (novel)

X

Child and Parent: age, race/ethnicity, country of origin, zip code

Date of birth, CSER measure adapted from US Census [54, 55], 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 [52]

Marital status: NYCKidSeq (novel)

X

  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