Table 2.
Self-reported outcomes by race among adolescents and young adults with moderate or severe hemophilia (n = 80)
| Non-whitea(n = 19) | White (n = 61) | ||||
|---|---|---|---|---|---|
| Outcome of interest | Median | Mean | Median | Mean | p valued |
| Adherenceb | |||||
| VERITAS-Pro | 47.5 | 48.4 | 48.0 | 50.0 | .87 |
| VERITAS-PRN | 43.0 | 47.3 | 52.0 | 52.4 | .41 |
| VERITAS-combined | 47.0 | 48.3 | 49.0 | 50.3 | .69 |
| Chronic painc | |||||
| FPS-R | 4.0 | 3.9 | 0 | 1.8 | .01 |
| Acute painc | |||||
| FPS-R | 6.0 | 5.9 | 4.0 | 4.7 | .07 |
| QoL (SF-36) | |||||
| PCS | 59.0 | 63.4 | 83.8 | 78.0 | .02 |
| MCS | 75.0 | 71.3 | 76.4 | 73.3 | .62 |
| BP | 62.5 | 60.5 | 80.0 | 74.8 | .02 |
| PF | 55.0 | 63.7 | 90.0 | 79.8 | .03 |
| RP | 75.0 | 61.8 | 100.0 | 79.5 | .01 |
| GH | 70.0 | 65.3 | 75.0 | 74.6 | .21 |
| VT | 65.0 | 64.2 | 60.0 | 61.1 | .72 |
| SF | 75.0 | 71.7 | 87.5 | 82.2 | .05 |
| RE | 100.0 | 73.7 | 100.0 | 80.3 | .55 |
| MH | 76.0 | 75.4 | 76.0 | 75.3 | .96 |
PCS the physical composite summary score, MCS the mental composite summary score, BP bodily pain (2 items), PF physical function (10 items), RP role limitations due to physical health problems (4 items), GH general health (5 items), VT vitality (4 items), SF social functioning (2 items), RE role limitations due to emotional problems (3 items), MH emotional well-being/mental health (5 items)
aMost (73 %) non-white respondents were black or African-American, 14 % were mixed race, 9 % were Asian, and 5 % were American Indian or Alaskan Native
bAdherence was assessed using the Validated Hemophilia Regimen Treatment Adherence Scale (VERITAS)-Pro for participants who reported treating their bleeding disorder prophylactically (n = 69). The VERITAS-PRN was used to measure adherence for participants who reported on-demand (i.e., episodic) factor treatment (n = 11). Possible VERITAS subscale scores ranged from 4 points (most adherent) to 20 (least adherent), and possible total scores ranged from 24 (most adherent) to 120 (least adherent). As an experimental measure, we also combined VERITAS-Pro and VERITAS-PRN responses into one category (VERITAS-combined) to evaluate the relationship between adherence and QoL for both prophylactic and on-demand AYA PWH simultaneously
cFPS-R is the revised Faces Pain Scale. FPS-R scores range from zero to 10 (in increments of two) with the faces representing the lowest and highest levels of pain intensity coded as zero and 10, respectively
d p-values were calculated by comparing the difference in medians by age group using the Wilcoxon rank sum test