Table 1.
Characteristics of baseline survey respondents stratified by intervention group. N=167 (81% of those who initally consented to participate)
| Total | No Video | Video | p-value | ||||
|---|---|---|---|---|---|---|---|
| N | % | Freq | % | Freq | % | ||
| TOTAL | 167 | 86 | 81 | ||||
|
| |||||||
| Patient and Visit Demographics | |||||||
|
| |||||||
| Male | 102 | 61% | 52 | 60% | 50 | 62% | 0.87 |
| Ageb | 8.4 | 6.7 | 8.7 | 7.1 | 8.0 | 6.3 | 0.46 |
| Indication | 0.57 | ||||||
| Developmental Delay/ Intellectual Disability | 46 | 28% | 23 | 27% | 23 | 28% | |
| Birth Defects/ Dysmorphic | 30 | 18% | 12 | 14% | 18 | 22% | |
| Seizures | 14 | 8% | 6 | 7% | 8 | 10% | |
| Autism | 41 | 25% | 25 | 29% | 16 | 20% | |
| Dermatology | 8 | 5% | 4 | 5% | 4 | 5% | |
| Otherc | 28 | 17% | 16 | 19% | 12 | 15% | |
| Initial visit | 110 | 66% | 59 | 69% | 51 | 63% | 0.47 |
| Follow up visit | 57 | 34% | 27 | 31% | 30 | 37% | |
| Counselor | |||||||
| 1 | 19 | 11% | 8 | 9% | 11 | 14% | |
| 2 | 7 | 4% | 3 | 3% | 4 | 5% | |
| 3 | 4 | 2% | 2 | 2% | 2 | 2% | |
| 4 | 16 | 10% | 10 | 12% | 6 | 7% | |
| 5 | 6 | 4% | 3 | 3% | 3 | 4% | |
| 6 | 10 | 6% | 5 | 6% | 5 | 6% | |
| 7 | 20 | 12% | 10 | 12% | 10 | 12% | |
| 8 | 38 | 23% | 24 | 28% | 14 | 17% | |
| 9 | 19 | 11% | 9 | 10% | 10 | 12% | |
| 10 | 10 | 6% | 4 | 5% | 6 | 7% | |
| 11 | 8 | 5% | 3 | 3% | 5 | 6% | |
| 12 | 6 | 4% | 3 | 3% | 3 | 4% | |
| 13 | 4 | 2% | 2 | 2% | 2 | 2% | |
| GC < 5yr | 99 | 59% | 54 | 63% | 45 | 56% | 0.34 |
| GC > 5yr | 68 | 41% | 32 | 37% | 36 | 44% | |
| Physician | 0.75 | ||||||
| 1 | 60 | 36% | 31 | 36% | 29 | 36% | |
| 2 | 14 | 8% | 6 | 7% | 8 | 10% | |
| 3 | 4 | 2% | 2 | 2% | 2 | 2% | |
| 4 | 17 | 10% | 11 | 13% | 6 | 7% | |
| 5 | 72 | 43% | 36 | 42% | 36 | 44% | |
| CES Complete | 157 | 94% | 79 | 92% | 78 | 96% | 0.22 |
| CES Result (n=157) | |||||||
| Pathogenic (P) or Likely Pathogenic (LP) variant | 43 | 27% | 21 | 26% | 22 | 28% | 0.92 |
| Variant of Uncertain Signficance (VUS) | 25 | 16% | 12 | 15% | 13 | 17% | |
| No P/LP variant or VUS | 89 | 57% | 46 | 57% | 43 | 55% | |
| GC survey completion (days) b | 5.7 | 7.0 | 5.1 | 5.3 | 6.3 | 8.3 | 0.31 |
| Male | 34 | 20% | 16 | 19% | 18 | 22% | 0.56 |
| Female | 132 | 79% | 70 | 81% | 62 | 77% | |
| Race | 0.50 | ||||||
| White, Non-Hispanic | 92 | 55% | 49 | 57% | 43 | 53% | |
| All other races | 73 | 44% | 35 | 41% | 38 | 47% | |
| NR | 2 | 1% | 2 | 2% | 0 | 0% | |
| Education | 0.71 | ||||||
| < College | 49 | 29% | 24 | 28% | 25 | 31% | |
| ≥ College | 117 | 70% | 61 | 71% | 56 | 69% | |
| NR | 1 | 1% | 1 | 1% | 0 | 0% | |
| Age (n=142)b | 40.5 | 8.5 | 40.8 | 8.9 | 40.3 | 8.2 | 0.73 |
| Employment | 0.50 | ||||||
| Employed | 107 | 64% | 53 | 62% | 54 | 67% | |
| Unemployed, homemaker, retired, disabled | 60 | 36% | 33 | 38% | 27 | 33% | |
| NR | 0 | 0% | 0 | 0% | |||
| Not Married | 40 | 24% | 24 | 28% | 16 | 20% | 0.20 |
| Married | 126 | 75% | 61 | 71% | 65 | 80% | |
| NR | 1 | 1% | 1 | 1% | 0 | 0% | |
| Depression, PHQ-9 | 21 | 13% | 11 | 13% | 10 | 12% | 0.96 |
| NM | 3 | 2% | 1 | 1% | 2 | 2% | |
| Anxiety, GAD-7 | 20 | 12% | 14 | 16% | 6 | 7% | 0.07 |
| NM | 5 | 3% | 3 | 3% | 2 | 2% | |
| Time from appointment to survey (days) b | 22.8 | 34.0 | 20.6 | 37.2 | 25.2 | 30.5 | 0.38 |
| Time from results disclosure to FU survey (days) b | 68.0 | 49.2 | 70.6 | 30.4 | 65.5 | 34.0 | 0.56 |
Abbreviations: not reported (NR), not measured (NM), follow up (FU), personal health questionnaire 9-item (PHQ-9), generalized anxiety disorder 7-item (GAD-7)
a
p-value calculated by chi square or Fisher exact analysis for categorical variables and two sample t-test for continuous variables
b
mean and standard deviation
c
hearing loss, ophthalmological, myopathy, skeletal dysplasia, connective tissue disorder, metabolic