Table 3 HAE-QoL scores and variations
HAE-QoL score | Basal | After 6 months (visit 3) | After 12 months (visit 4) | |||
Total (N = 15) | 88.6 ± 24.4 (75─106) | 95.1 ± 24 (85─103) | 94 ± 27.6 (86─113) | |||
Physical functioning and health | 15.1 ± 4 (12─16) | 15.8 ± 4.7 (15─19) | 16 ± 4 (15─20) | |||
Disease related stigma | 10.7 ± 3.5 (8─14) | 10.7 ± 4 (8─15) | 10.7 ± 3.9 (9─14) | |||
Emotional role and social functioning | 14.4 ± 3.4 (14─16) | 14.4 ± 4.4 (14─17) | 14.9 ± 4.5 (15─18) | |||
Concern about offspring | 6.2 ± 3.1 (3─9) | 7.6 ± 2.6 (6─10) | 7.1 ± 3.1 (4─10) | |||
Perceived control over illness | 11.3 ± 4 (9─15) | 12.8 ± 3.9 (11─14) | 13.1 ± 4.1 (11─16) | |||
Mental health | 14.7 ± 5.4 (11─20) | 16.5 ± 5.8 (14─21) | 15.2 ± 5.2 (12─18) | |||
Treatment difficulties | 16.3 ± 5.3 (15─20) | 17.2 ± 5.4 (15─22) | 16.9 ± 5.5 (14─22) | |||
Differences in HAE-QoL score between the visits | Visit 3 vs 1 | p | Visit 4 vs 1 | p | Visit 4 vs 3 | p |
Total (N = 15) | 6.4 ± 13.5 (4─14) | 0.49 | 5.4 ± 21.4 (−4─15) | 0.59 | −1.1 ± 13.4 (−6─3) | 0.91 |
Physical functioning and health | 0.7 ± 2.8 (−1─3) | 0.67 | 0.9 ± 3 (−1─4) | 0.55 | 0.2 ± 2.2 (0─1) | 0.90 |
Disease related stigma | 0 ± 2.3 (−1─1) | 1 | 0 ± 2.8 (−1─1) | 1 | 0 ± 1.4 (−1─0) | 1 |
Emotional role and social functioning | 0.1 ± 2.7 (−1─2) | 0.71a | 0.5 ± 2.7 (−1─2) | 0.36a | 0.4 ± 1.6 (−1─2) | 0.69a |
Concern about offspring | 1.4 ± 2.3 (0─1) | 0.20a | 0.9 ± 3.1 (0─1) | 0.34a | −0.5 ± 2 (0─0) | 0.87a |
Perceived control over illness | 1.5 ± 2.9 (0─4) | 0.32 | 1.9 ± 3.9 (−1─4) | 0.24 | 0.4 ± 2.9 (− 1─3) | 0.82 |
Mental health | 1.8 ± 3.9 (1─4) | 0.41 | 0.5 ± 4.7 (− 2─4) | 0.80 | −1.3 ± 4.4 (− 2─0) | 0.54 |
Treatment difficulties | 0.9 ± 4 (0─3) | 0.65 | 0.6 ± 5.8 (0─2) | 0.75 | −0.3 ± 4.6 (−1─0) | 0.89 |