Table 3 Parent measures and assessments

Sociodemographic variables^a

X

 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 caregiver^a

1 item

X

X

X

 Perceived health of child [60]^a

1 item

X

X

X

 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

 How much of the prep materials did caregiver review^c

1 item

X

X

 Helpfulness of prep materials ^a

Varies by time point

X

X

X

 Perceived patient-centeredness of clinical consultation [73]

21 items

X

X

 Number of questions asked during clinic visit

Coded from audio recordings

X

 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 results^a,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