Table 2.
Demographic characteristics of social media platforms, themes, and users.
| Theme | Twitter 995 (71.0%) |
Instagram 338 (24.1%) |
TikTok 68 (4.9%) |
p-value | Males 434 (31.0%) | Females 967 (69.0%) | p-value | Patient themselves 1088 (78.3%) |
Someone else 301 (21.7%) |
p-value |
|---|---|---|---|---|---|---|---|---|---|---|
| Gender | ||||||||||
| Male | 305 (30.7%) | 110 (32.5%) | 19 (27.9%) | 0.694 | — | — | — | 330 (30.3%) | 99 (32.9%) | 0.395 |
| Female | 690 (69.4%) | 228 (67.5%) | 49 (72.1%) | — | — | 202 (67.1%) | 758 (69.7%) | |||
| Who's posting | ||||||||||
| Patient themselves | 775 (78.6%) | 260 (77.6%) | 53 (77.9%) | 0.395 | 330 (76.92%) | 758 (79.0%) | 0.395 | — | — | — |
| Someone else | 211 (21.4%) | 75 (22.4%) | 15 (22.1%) | 99 (23.1%) | 202 (21.0%) | — | — | |||
| Themes | ||||||||||
| Recovery/rehab | 35 (3.5%) | 229 (67.8%) | 61 (89.7%) | <0.001 | 104 (24.0%) | 221 (22.9%) | 0.649 | 530 (48.7%) | 135 (44.9%) | 0.560 |
| Recounts other symptoms/complications to followers | 497 (50.0%) | 138 (40.8%) | 34 (50.0%) | 0.014 | 193 (44.5%) | 476 (49.2%) | 0.099 | 63 (5.8%) | 18 (6.0%) | 0.235 |
| Fear or rare disease/time bomb | 35 (3.5%) | 44 (13.0%) | 2 (2.9%) | <0.001 | 24 (5.5%) | 57 (5.9%) | 0.787 | 194 (17.8%) | 67 (22.3%) | 0.901 |
| Survival/death | 87 (8.7%) | 134 (40.5%) | 39 (57.4%) | <0.001 | 81 (18.7%) | 182 (18.8%) | 0.944 | 174 (16.0%) | 54 (17.9%) | 0.082 |
| Pain | 54 (5.4%) | 143 (42.3%) | 33 (48.5%) | <0.001 | 66 (15.2%) | 164 (17.0%) | 0.413 | 194 (17.8%) | 0.419 | |
| Most difficult part of experience | 32 (3.2%) | 149 (44.1%) | 29 (42.7%) | <0.001 | 65 (15.0%) | 145 (15.0%) | 0.993 | 160 (14.7%) | 49 (16.3%) | 0.499 |
| Resiliency | 13 (1.3%) | 167 (49.4%) | 27 (39.7%) | <0.001 | 59 (14.0%) | 148 (15.3%) | 0.404 | 157 (14.4%) | 49 (16.3%) | 0.424 |
| Raises awareness of condition | 858 (86.2%) | 162 (47.9%) | 36 (52.9%) | <0.001 | 332 (76.5%) | 724 (74.9%) | 0.513 | 822 (75.6%) | 223 (74.1%) | 0.602 |
| Spreading positivity | 183 (18.4%) | 238 (70.4%) | 54 (79.4%) | <0.001 | 151 (34.8%) | 324 (33.5%) | 0.638 | 356 (32.7%) | 115 (38.2%) | 0.075 |
| Religious connotations | 19 (1.9%) | 52 (15.4%) | 10 (14.7%) | <0.001 | 31 (7.1%) | 50 (5.2%) | 0.144 | 59 (5.4%) | 21 (7.0%) | 0.306 |
| Quality of life | 17 (1.7%) | 173 (51.2%) | 14 (20.6%) | <0.001 | 65 (15.0%) | 139 (14.4%) | 0.767 | 154 (14.2%) | 48 (16.0%) | 0.435 |
| Fear of risk of stroke/new AVM | 12 (1.2%) | 29 (8.6%) | 0 | <0.001 | 15 (3.5%) | 26 (2.7%) | 0.431 | 35 (3.2%) | 6 (2.0%) | 0.267 |
| Mental health | 31 (3.1%) | 60 (17.8%) | 2 (2.9%) | <0.001 | 21 (4.8%) | 72 (7.5%) | 0.07 | 76 (7.0%) | 17 (5.7%) | 0.411 |
| Scientific explanation of injury | 54 (5.4%) | 42 (12.4%) | 2 (2.9%) | <0.001 | 21 (4.8%) | 77 (8.0%) | 0.034 | 82 (7.5%) | 16 (5.3%) | 0.183 |
| Offers/reaches out for online support | 32 (3.2%) | 35 (10.4%) | 0 | <0.001 | 15 (3.5%) | 52 (5.4%) | 0.119 | 52 (4.8%) | 15 (5.0%) | 0.884 |
| Concern of appearance while recovering from treatment | 10 (1.0%) | 24 (7.1%) | 1 (1.5%) | <0.001 | 7 (1.6%) | 28 (2.9%) | 0.155 | 29 (2.7%) | 6 (2.0%) | 0.510 |
| Satisfaction with healing process | 12 (1.2%) | 128 (37.9%) | 4 (5.9%) | <0.001 | 49 (11.3%) | 95 (9.8%) | 0.403 | 103 (9.5%) | 41 (13.6%) | 0.036 |
| Fear of surgery | 4 (0.4%) | 22 (6.5%) | 0 | <0.001 | 12 (2.76) | 14 (1.5%) | 0.091 | 25 (2.3%) | 1 (0.3%) | 0.026 |
| Update of appearance | 13 (1.3%) | 33 (9.8%) | 3 (4.4%) | <0.001 | 14 (3.2%) | 35 (3.6%) | 0.711 | 41 (3.8%) | 8 (2.7%) | 0.355 |
| Invisible illness | 19 (1.9%) | 16 (4.7%) | 0 | 0.006 | 6 (1.4%) | 29 (3.0%) | 0.073 | 26 (2.4%) | 9 (3.0%) | 0.556 |
| COVID-19 | 9 (0.9%) | 8 (2.4%) | 2 (2.9%) | 0.068 | 6 (1.4%) | 13 (1.3%) | 0.955 | 14 (1.3%) | 5 (1.7%) | 0.621 |
AVM: arteriovenous malformation.
Bold values are statistically significant p-values.