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Table 3 Patient- and caregiver-reported wound burden of epidermolysis bullosa by type/subtype

From: The challenges of living with and managing epidermolysis bullosa: insights from patients and caregivers

Wound burden

Patient-reported

Caregiver-reported

Overalla

N = 63

Simplex

n = 21

Junctional

n = 8

Dominant dystrophic n = 14

Recessive dystrophic n = 19

Overalla

N = 93

Simplex

n = 34

Junctional

n = 7

Dominant dystrophic n = 17

Recessive dystrophic n = 34

Average percentage of body covered by wounds, n (%)

  < 10%

22 (34.9)

13 (61.9)

2 (25.0)

5 (35.7)

2 (10.5)

25 (26.9)

12 (35.3)

2 (28.6)

7 (41.2)

4 (11.8)

 10–30%

21 (33.3)

6 (28.6)

4 (50.0)

4 (28.6)

6 (31.6)

35 (37.6)

17 (50.0)

3 (42.9)

5 (29.4)

9 (26.5)

  > 30%

20 (31.7)

2 (9.5)

2 (25.0)

5 (35.7)

11 (57.9)

33 (35.5)

5 (14.7)

2 (28.6)

5 (29.4)

21 (61.8)

Time required for whole body wound care (including preparation and cleanup), n (%)

  < 2 h

45 (71.4)

20 (95.2)

6 (75.0)

11 (78.6)

7 (36.8)

61 (65.6)

30 (88.2)

4 (57.1)

14 (82.4)

12 (35.3)

 2–4 h

10 (15.9)

0

2 (25.0)

3 (21.4)

5 (26.3)

23 (24.7)

3 (8.8)

1 (14.3)

3 (17.6)

16 (47.1)

  > 4 h

8 (12.7)

1 (4.8)

0

0

7 (36.8)

9 (9.7)

1 (2.9)

2 (28.6)

0

6 (17.6)

Frequency of dressing changes for noninfected wounds, n (%)

 Twice daily

2 (3.2)

0

0

1 (7.1)

1 (5.3)

2 (2.2)

2 (5.9)

0

0

0

 Every day

25 (39.7)

7 (33.3)

4 (50.0)

7 (50.0)

7 (36.8)

41 (44.1)

13 (38.2)

3 (42.9)

10 (58.8)

15 (44.1)

 Every other day

13 (20.6)

1 (4.8)

2 (25.0)

3 (21.4)

7 (36.8)

17 (18.3)

3 (8.8)

1 (14.3)

2 (11.8)

11 (32.4)

 Every 3 days

3 (4.8)

0

1 (12.5)

0

2 (10.5)

8 (8.6)

0

2 (28.6)

0

6 (17.6)

 As needed

5 (7.9)

4 (19.0)

1 (12.5)

0

0

6 (6.5)

5 (14.7)

0

1 (5.9)

0

 Otherb

15 (23.8)

9 (42.9)

0

3 (21.4)

2 (10.5)

19 (20.4)

11 (32.4)

1 (14.3)

4 (23.5)

2 (5.9)

Frequency of dressing changes for infected wounds, n (%)

  2–3x daily

11 (17.5)

6 (28.6)

1 (12.5)

1 (7.1)

3 (15.8)

14 (15.1)

7 (20.6)

2 (28.6)

2 (11.8)

3 (8.8)

 Every day

36 (57.1)

9 (42.9)

5 (62.5)

11 (78.6)

10 (52.6)

37 (39.8)

8 (23.5)

2 (28.6)

11 (64.7)

15 (44.1)

 Every other day

2 (3.2)

0

0

0

2 (10.5)

5 (5.4)

0

0

0

5 (14.7)

 Every 2–3 days

1 (1.6)

0

0

0

1 (5.3)

2 (2.2)

0

1 (14.3)

0

1 (2.9)

 As needed

3 (4.8)

3 (14.3)

0

0

0

3 (3.2)

2 (5.9)

0

0

1 (2.9)

 Otherc

5 (7.9)

1 (4.8)

2 (25.0)

1 (7.1)

1 (5.3)

12 (12.9)

6 (17.6)

0

3 (17.6)

3 (8.8)

  1. aTwo patients (1 self-reported and 1 caregiver-reported) had another type or unknown type of epidermolysis bullosa. bOther (n = 1 unless otherwise noted): does not have wounds (n = 5); does not dress wounds (n = 4); rarely dresses wounds (n = 4); does not dress wound unless infected (n = 3); try not to dress (n = 3); as needed, but prefers to leave open to air; bandage for a day then let air heal; depends on location; depends on wound severity (1–3x per day); depends on wounds; as needed, but if bandaged, every day; less as patient has gotten older; Monday, Wednesday, Friday; most wounds not covered; N/A (not applicable); only rarely when the patient has wounds; only use dressings if oozing; varies; varies (3–4x daily); varies with activities and weather; varies with wound size (2–3x daily). cOther (n = 1 unless otherwise noted): rarely (n = 4); depends on location (n = 2); varies according to needs (n = 2); 4–5x daily; depends on how infected; does not wrap; every 3 h; every few hours; Monday, Wednesday, Friday; same as noninfected; several times depending on wound
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