Table 3.
Parent measures and assessments
| Assessments | ||||||
|---|---|---|---|---|---|---|
| Measure | Number of items | Intake | Pre-clinic visit | Post-clinic visit | Two-week post-return of results | Six-month post-return of results |
| Sociodemographic variablesa | X | |||||
| Medical/healthcare characteristics | ||||||
| Length of diagnostic odyssey c | 1 item | X | ||||
| Access to care a, c | 2 items | X | ||||
| Pediatric quality of life [PEDS-QL] [58]a | 23 items | X | X | |||
| Parent quality of life [SF-12] [59]a | 12 items | X | X | X | ||
| Perceived health of caregivera | 1 item | X | X | X | ||
| Perceived health of child [60]a | 1 item | X | X | X | ||
| Psychosocial characteristics | ||||||
| Preferred control in medical decisions [61] | 1 item | X | X | |||
| Decision self-efficacy [62] | 7 items | X | X | X | X | |
| Missed work due to child’s condition [63]b | 1 item | X | X | X | ||
| Financial toxicity [64] | 11 items | X | X | X | ||
| Group-based medical mistrust [65] | 12 items | X | X | |||
| Personal physician trust/mistrust [66, 67] | 8 items | X | X | |||
| Genomic knowledge [UNC-GKS] [29] | 25 items | X | X | |||
| Health literacy [BRIEF] [68]a | 4 items | X | ||||
| Subjective numeracy [69]^ | 3 items | X | ||||
| Depressive symptoms [PHQ-8] [70] | 8 items | X | X | X | ||
| Anxiety [GAD-7] [71] | 7 items | X | X | X | ||
| Emotional state [PANAS] [72]b | 22 items | X | ||||
| Variables related to preparation materials | ||||||
| How much of the prep materials did caregiver reviewc | 1 item | X | X | |||
| Helpfulness of prep materials a | Varies by time point | X | X | X | ||
| Primary psychosocial outcomes | ||||||
| Perceived patient-centeredness of clinical consultation [73] | 21 items | X | X | |||
| Number of questions asked during clinic visit | Coded from audio recordings | X | ||||
| Variables related to diagnostic testing & return of results | ||||||
| Understanding of diagnostic testing [74]c,b |
6 items Checklist items vary by timepoint |
X | X | X | ||
| Patient experience and satisfaction [75]b | Varies by time point | X | X | |||
| Understanding of diagnostic testing resultsa,d | 1 item | X | ||||
| Reaction to diagnostic testing results c | 1 item | X | ||||
| Trust in results c | 1 item | X | X | |||
| Feelings about genomic testing results [FACToR] [76]a |
14 items Scale |
X | X | |||
| Personal utility of diagnostic results [PrU] [77] a | 17 items | X | X | |||
| Self-efficacy for explaining diagnostic results c | 5 items | X | ||||
| Assessment of communication effectiveness [78]a,b | 15 items | X | ||||
aCSER-harmonized measures
bAdapted measure
cDeveloped for NCGENES 2
dDeveloped for CSER 2