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Table 3 OI-related clinical characteristics of individuals with OI

From: The IMPACT survey: a mixed methods study to understand the experience of children, adolescents and adults with osteogenesis imperfecta and their caregivers

 

Adults with OI (n = 1440)

Adolescents with OI (n = 92)

Proxy children with OI (n = 474)

Proxy adolescents with OI (n = 171)

Proxy adults with OI (n = 135)

OI severity, n (%)a

 Mild

507 (35)

30 (33)

157 (33)

63 (37)

38 (28)

 Moderate

671 (47)

48 (52)

216 (46)

70 (41)

58 (43)

 Severe

205 (14)

12 (13)

88 (19)

33 (19)

36 (27)

 I don’t know

53 (4)

2 (2)

11 (2)

4 (2)

3 (2)

Prefer not to say

4 (0.3)

0 (0)

2 (0.4)

1 (0.6)

0 (0)

OI type, n (%)b

Undefined type

127 (9)

7 (8)

36 (8)

19 (11)

7 (5)

I don’t know

286 (20)

7 (8)

55 (12)

24 (14)

25 (19)

Prefer not to say

2 (0.1)

0 (0)

1 (0.2)

0 (0)

2 (2)

Type 1 (I)

543 (38)

32 (35)

174 (37)

56 (33)

44 (33)

Type 2 (II)

23 (2)

2 (2)

7 (2)

3 (2)

3 (2)

Type 3 (III)

225 (16)

26 (28)

91 (19)

29 (17)

27 (20)

Type 4 (IV)

158 (11)

11 (12)

69 (15)

27 (16)

21 (16)

Type 5 (V)

26 (2)

3 (3)

16 (3)

4 (2)

1 (0.7)

Type 6 (VI)

4 (0.3)

0 (0)

8 (2)

2 (1)

0 (0)

Type 7 (VII)

2 (0.1)

0 (0)

1 (0.2)

0 (0)

0 (0)

Type 8 (VIII)

1 (0.1)

0 (0)

1 (0.2)

3 (2)

0 (0)

Type 9 (IX)

1 (0.1)

1 (1)

0 (0)

0 (0)

0 (0)

Type 11 (XI)

2 (0.1)

1 (1)

0 (0)

0 (0)

0 (0)

Type 14 (XIV)

0 (0)

0 (0)

0 (0)

0 (0)

1 (1)

Type 15 (XV)

1 (0.1)

0 (0)

5 (1)

0 (0)

0 (0)

Other

39 (3)

2 (2)

10 (2)

4 (2)

4 (3)

Genetic confirmation, n (%)c

Yes

916 (64)

73 (79)

397 (84)

130 (76)

95 (70)

No

370 (26)

12 (13)

63 (14)

34 (20)

34 (25)

I don’t know

153 (11)

6 (7)

14 (3)

7 (4)

5 (4)

Prefer not to say

1 (0.1)

1 (1)

0 (0)

0 (0)

1 (0.7)

Mobility, n (%)d

Walking (inside)

900 (63)

56 (61)

338 (71)

118 (69)

82 (61)

Walking (outside)

730 (51)

49 (53)

300 (63)

112 (66)

80 (59)

Cane/walking stick (inside)

71 (5)

3 (3)

6 (1)

6 (4)

3 (2)

Cane/walking stick (outside)

163 (11)

4 (4)

6 (1)

7 (4)

5 (4)

Walking frame (inside)

20 (1)

6 (7)

23 (5)

15 (9)

1 (0.7)

Walking frame (outside)

16 (1)

3 (3)

15 (3)

6 (4)

0 (0)

Rollator (inside)

55 (4)

7 (8)

23 (5)

8 (5)

2 (1)

Rollator (outside)

61 (4)

2 (2)

15 (3)

6 (4)

4 (3)

Crutches (inside)

96 (7)

6 (7)

9 (2)

6 (4)

7 (5)

Crutches (outside)

136 (9)

9 (10)

3 (0.6)

4 (2)

7 (5)

Manuel wheelchair (inside)

300 (21)

18 (20)

61 (13)

38 (22)

27 (20)

Manuel wheelchair (outside)

370 (26)

33 (36)

91 (19)

61 (36)

33 (24)

Powered wheelchair (inside)

125 (9)

5 (5)

9 (2)

3 (2)

12 (9)

Powered wheelchair (outside)

198 (14)

8 (9)

16 (3)

10 (6)

18 (13)

Mobility scooter (inside)

4 (0.3)

0 (0)

6 (1)

0 (0)

0 (0)

Mobility scooter (outside)

65 (5)

0 (0)

3 (0.6)

1 (0.6)

2 (1)

Crawling (inside)

58 (4)

9 (10)

115 (24)

25 (15)

3 (2)

Crawling (outside)

13 (0.9)

0 (0)

46 (10)

2 (1)

0 (0)

Being carried (inside)

26 (2)

8 (9)

130 (27)

14 (8)

5 (4)

Being carried (outside)

32 (2)

10 (11)

136 (29)

17 (10)

2 (1)

Laying in bed or stretcher (inside)

20 (1)

7 (8)

36 (8)

4 (2)

3 (2)

Laying in bed or stretcher (outside)

4 (0.3)

0 (0)

15 (3)

3 (2)

2 (1)

Other (inside)

29 (2)

5 (5)

24 (5)

2 (1)

0 (0)

Other (outside)

35 (2)

3 (3)

28 (6)

4 (2)

2 (1)

Height, n (%)e

 < 50 cm

9 (0.6)

1 (1)

7 (1)

1 (0.6)

0 (0)

 ≥ 50–80 cm

13 (0.9)

1 (1)

71 (15)

2 (1)

4 (3)

 > 80–100 cm

95 (7)

4 (4)

126 (27)

11 (6)

9 (7)

 > 100–130 cm

270 (19)

23 (25)

179 (38)

27 (16)

21 (16)

 > 130–160 cm

702 (49)

44 (48)

54 (11)

86 (50)

49 (36)

 > 160 cm

331 (23)

13 (14)

0 (0)

40 (23)

48 (36)

I don’t know

18 (1)

5 (5)

36 (8)

4 (2)

3 (2)

Prefer not to say

2 (0.1)

1 (1)

1 (0.2)

0 (0)

1 (0.7)

  1. OI, osteogenesis imperfecta
  2. aQuestions 18, 32, 46, 54 and 312 “How would you describe the severity of your/your child’s/your children’s OI? Answer options included mild, moderate, severe, prefer not to say, I don’t know. bQuestions 17, 31, 45, 53 and 311.” If you/your child/your children have received an OI type as part of your OI diagnosis or treatment, please indicate your type using the dropdown below.” Answer options included Type 1–Type 15, undefined type, I don’t know, prefer not to say, other type. Participants who responded “other” could provide a free text answer. cQuestions 19, 33, 47, 55 “Do you/your child/your children have a genetically confirmed diagnosis of OI”. Answer options included yes, I don’t know, prefer not to say. dQuestions 16, 36, 66, 67, 310 “How do you/your child/your children get around?”. Answer options for both outside and inside your home included Walking unaided, cane/walking stick, walking frame, rollator (wheeled walker), crutches, manual wheelchair, powered wheelchair, mobility scooter, crawling, being carried, laying in bed/stretcher, other (please specify below). Respondents could choose more than one answer in each category. eQuestions 14, 15, 27, 28, 43, 44, 51, 52, 308, 309 “What is your/your child’s height”. Answer options included metric or imperial measurements and “I don’t know”, “Prefer to say”. All values were converted to metric measurements
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Orphanet Journal of Rare Diseases

ISSN: 1750-1172