Descriptive statistics for HHT QoL pilot items and PROMIS T scores
| Variable . | Mean . | SD . | Minimum . | Maximum . |
|---|---|---|---|---|
| HHT QoL Item 1 (interrupted job) | 3.4 | 1.8 | 1 | 6 |
| HHT QoL Item 2 (interrupted family) | 2.9 | 1.1 | 1 | 5 |
| HHT QoL Item 3 (avoided social activities) | 2.5 | 1.3 | 1 | 5 |
| HHT QoL Item 4 (miss work or school) | 2.8 | 1.5 | 1 | 5 |
| HHT self-reported severity | 2.0 | 0.7 | 1 | 3 |
| Mild, n (%) | 84 (29) | — | — | — |
| Moderate, n (%) | 133 (46) | — | — | — |
| Severe, n (%) | 73 (25) | — | — | — |
| PROMIS Satisfaction with Discretionary Social Activities | 36.4 | 14.3 | 12 | 60 |
| PROMIS Satisfaction with Social Roles | 41.5 | 17.2 | 14 | 70 |
| PROMIS Emotional Distress-Depression | 64.8 | 24.2 | 30 | 137 |
| Variable . | Mean . | SD . | Minimum . | Maximum . |
|---|---|---|---|---|
| HHT QoL Item 1 (interrupted job) | 3.4 | 1.8 | 1 | 6 |
| HHT QoL Item 2 (interrupted family) | 2.9 | 1.1 | 1 | 5 |
| HHT QoL Item 3 (avoided social activities) | 2.5 | 1.3 | 1 | 5 |
| HHT QoL Item 4 (miss work or school) | 2.8 | 1.5 | 1 | 5 |
| HHT self-reported severity | 2.0 | 0.7 | 1 | 3 |
| Mild, n (%) | 84 (29) | — | — | — |
| Moderate, n (%) | 133 (46) | — | — | — |
| Severe, n (%) | 73 (25) | — | — | — |
| PROMIS Satisfaction with Discretionary Social Activities | 36.4 | 14.3 | 12 | 60 |
| PROMIS Satisfaction with Social Roles | 41.5 | 17.2 | 14 | 70 |
| PROMIS Emotional Distress-Depression | 64.8 | 24.2 | 30 | 137 |
N = 290. HHT severity is scored as mild, 1; moderate, 1; and severe, 3. PROMIS measures are scored relative to a normative sample with a mean of 50 and standard deviation of 10. For PROMIS Discretionary Social Activities and Social Roles, lower scores reflect worse outcomes. For all other items, higher scores reflect worse outcomes.