Table 4 QOLEB measures in respondents with epidermolysis bullosa simplex (EBS), by age
QOLEB measure | All, No (%) (n = 70) | Age 0–17, No. (%) (n = 14) | Age 18 + , No. (%) (n = 56) | P value |
|---|---|---|---|---|
Ability to move around at home | 0.12 | |||
No impact | 21 (30.0) | 5 (35.7) | 16 (28.6) | |
A little | 39 (55.7) | 7 (50.0) | 32 (57.1) | |
A lot | 10 (14.3) | 2 (14.3) | 8 (14.3) | |
Severely impacted | 0 (0.0) | 0 (0.0) | 0 (0.0) | |
Ability to bath or shower | 0.94 | |||
No impact | 56 (80.0) | 11 (78.6) | 45 (80.4) | |
Sometimes need assistance | 13 (18.6) | 3 (21.4) | 10 (17.9) | |
Need assistance most of the time | 0 (0.0) | 0 (0.0) | 0 (0.0) | |
Need assistance every time | 1 (1.4) | 0 (0.0) | 1 (1.8) | |
Physical pain | 0.59 | |||
No pain | 4 (5.7) | 0 (0.0) | 4 (7.1) | |
Occasional pain | 37 (52.9) | 10 (71.4) | 27 (48.2) | |
Frequent pain | 25 (35.7) | 3 (21.4) | 22 (39.3) | |
Constant pain | 4 (5.7) | 1 (7.1) | 3 (5.4) | |
Ability to write | 0.89 | |||
No impact | 49 (70.0) | 10 (71.4) | 39 (69.6) | |
Difficult to grip pen | 10 (14.3) | 2 (14.3) | 8 (14.3) | |
Easier to type than write | 10 (14.3) | 2 (14.3) | 8 (14.3) | |
Cannot write due to EB | 1 (1.4) | 0 (0.0) | 1 (1.8) | |
Ability to eat | 0.37 | |||
No impact | 58 (82.9) | 10 (71.4) | 48 (85.7) | |
A little | 9 (12.9) | 2 (14.3) | 7 (12.5) | |
A lot | 2 (2.9) | 2 (14.3) | 0 (0.0) | |
Rely on gastrostomy tube for nutrition | 1 (1.4) | 0 (0.0) | 1 (1.8) | |
Ability to go shopping | 0.6 | |||
No impact | 18 (25.7) | 3 (21.4) | 15 (26.8) | |
A little | 40 (57.1) | 8 (57.1) | 32 (57.1) | |
A lot | 10 (14.3) | 2 (14.3) | 8 (14.3) | |
Need assistance every time | 2 (2.9) | 1 (7.1) | 1 (1.8) | |
Involvement in sports | 0.25 | |||
No impact | 5 (7.1) | 1 (7.1) | 4 (7.1) | |
Need to be cautious in sports | 17 (24.3) | 1 (7.1) | 16 (28.6) | |
Need to avoid some sports | 48 (68.6) | 12 (85.7) | 36 (64.3) | |
Need to avoid all sports | 0 (0.0) | 0 (0.0) | 0 (0.0) | |
Feelings of frustration | 0.92 | |||
None | 1 (1.4) | 0 (0.0) | 1 (1.8) | |
A little | 34 (48.6) | 7 (50.0) | 27 (48.2) | |
A lot | 31 (44.3) | 6 (42.9) | 25 (44.6) | |
Severe/constant | 4 (5.7) | 1 (7.1) | 3 (5.4) | |
Ability to move around outside of home | 0.72 | |||
No impact | 15 (21.4) | 4 (28.6) | 11 (19.6) | |
A little | 29 (41.4) | 6 (42.9) | 23 (41.1) | |
A lot | 22 (31.4) | 1 (7.1) | 21 (37.5) | |
Severely impacted | 4 (5.7) | 3 (21.4) | 1 (1.8) | |
Impact on relationships with family members | 0.15 | |||
No impact | 27 (38.6) | 3 (21.4) | 24 (42.9) | |
A little | 33 (47.1) | 8 (57.1) | 25 (44.6) | |
A lot | 9 (12.9) | 2 (14.3) | 7 (12.5) | |
Severely impacted | 1 (1.4) | 1 (7.1) | 0 (0.0) | |
Feelings of embarrassment | 0.34 | |||
None | 24 (34.3) | 7 (50.0) | 17 (30.4) | |
A little | 28 (40.0) | 4 (28.6) | 24 (42.9) | |
A lot | 10 (14.3) | 1 (7.1) | 9 (16.1) | |
Severe/constant | 8 (11.4) | 2 (14.3) | 6 (10.7) | |
Home modifications (e.g., installing ramps) due to EB | 0.69 | |||
None | 64 (91.4) | 12 (85.7) | 52 (92.9) | |
A few | 5 (7.1) | 2 (14.3) | 3 (5.4) | |
A lot | 1 (1.4) | 0 (0.0) | 1 (1.8) | |
Extensive | 0 (0.0) | 0 (0.0) | 0 (0.0) | |
Impact on relationships with friends | 0.37 | |||
No impact | 32 (45.7) | 5 (35.7) | 27 (48.2) | |
A little | 28 (40.0) | 6 (42.9) | 22 (39.3) | |
A lot | 7 (10.0) | 2 (14.3) | 5 (8.9) | |
Severely impacted | 3 (4.3) | 1 (7.1) | 2 (3.6) | |
Feelings of anxiety or worry | 0.84 | |||
None | 21 (30.0) | 5 (35.7) | 16 (28.6) | |
A little | 31 (44.3) | 4 (28.6) | 27 (48.2) | |
A lot | 11 (15.7) | 3 (21.4) | 8 (14.3) | |
Severe/constant | 7 (10.0) | 2 (14.3) | 5 (8.9) | |
Financial impact of EB | 0.2 | |||
No impact | 15 (21.4) | 4 (28.6) | 21 (37.5) | |
Slightly impacted | 32 (45.7) | 5 (35.7) | 27 (48.2) | |
Greatly impacted | 12 (17.1) | 4 (28.6) | 8 (14.3) | |
Severely impacted | 1 (1.4) | 1 (7.1) | 0 (0.0) | |
Feelings of depression | 0.31 | |||
None | 32 (45.7) | 5 (35.7) | 27 (48.2) | |
A little | 25 (35.7) | 5 (35.7) | 20 (35.7) | |
A lot | 11 (15.7) | 3 (21.4) | 8 (14.3) | |
Severe/constant | 2 (2.9) | 1 (7.1) | 1 (1.8) | |
Feelings of discomfort due to others (e.g., teasing or staring) | 0.6 | |||
None | 24 (34.3) | 7 (50.0) | 17 (30.4) | |
A little | 32 (45.7) | 3 (21.4) | 29 (51.8) | |
A lot | 13 (18.6) | 4 (28.6) | 9 (16.1) | |
Severe/constant | 1 (1.4) | 0 (0.0) | 1 (1.8) |