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Table 13 Impact of signs, symptoms and events in proxy adolescents (n = 118)a

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

n, (%)

n affectedb

Severely impacted

Moderately impacted

Mildly impacted

Very mildly impacted

Not impacted

I don’t know

Prefer not to say

Missing

Basilar invagination

9

0 (0)

4 (3)

2 (2)

0 (0)

1 (0.9)

0 (0)

0 (0)

2 (2)

Dental problems

52

6 (5)

21 (18)

14 (12)

3 (3)

1 (0.9)

0 (0)

0 (0)

7 (6)

Eye or vision problems

21

3 (3)

5 (4)

7 (6)

3 (3)

1 (0.9)

0 (0)

0 (0)

2 (2)

Fatigue

74

13 (11)

25 (21)

16 (14)

7 (6)

1 (0.9)

0 (0)

0 (0)

12 (10)

Fractures

74

22 (19)

23 (19)

18 (15)

1 (0.9)

0 (0)

0 (0)

0 (0)

10 (8)

Gynaecological and menstruation problems

7

1 (2)

6 (11)

0 (0)

0 (0)

0 (0)

0 (0)

0 (0)

0 (0)

Hearing problems

9

2 (2)

3 (3)

1 (0.9)

3 (3)

0 (0)

0 (0)

0 (0)

0 (0)

Heart problems

3

0 (0)

1 (0.9)

1 (0.9)

1 (0.9)

0 (0)

0 (0)

0 (0)

0 (0)

High blood pressure

0

0 (0)

0 (0)

0 (0)

0 (0)

0 (0)

0 (0)

0 (0)

0 (0)

Hypermobility

50

6 (5)

11 (9)

10 (8)

8 (7)

7 (6)

1 (0.9)

0 (0)

7 (6)

Joint problems

31

5 (4)

13 (11)

5 (4)

2 (2)

1 (0.9)

0 (0)

0 (0)

5 (4)

Kidney and bladder problems

6

0 (0)

6 (5)

0 (0)

0 (0)

0 (0)

0 (0)

0 (0)

0 (0)

Low and underweight

16

2 (2)

4 (3)

7 (6)

1 (0.9)

0 (0)

0 (0)

0 (0)

2 (2)

Lung or breathing problems

11

3 (3)

4 (3)

3 (3)

1 (0.9)

0 (0)

0 (0)

0 (0)

0 (0)

Mental health problems

37

7 (6)

17 (14)

5 (4)

2 (2)

0 (0)

0 (0)

0 (0)

6 (5)

Obesity and overweight

22

5 (4)

8 (7)

3 (3)

0 (0)

3 (3)

0 (0)

0 (0)

3 (3)

Pain

108

22 (19)

42 (36)

19 (16)

8 (7)

1 (0.9)

0 (0)

0 (0)

16 (14)

Problems with chewing, swallowing, and speaking

4

3 (3)

0 (0)

1 (0.9)

0 (0)

0 (0)

0 (0)

0 (0)

0 (0)

Scoliosis or other bone problems

82

25 (21)

24 (20)

15 (13)

5 (4)

2 (2)

1 (0.9)

0 (0)

10 (8)

Sleep disturbance

29

8 (7)

14 (12)

3 (3)

0 (0)

0 (0)

0 (0)

0 (0)

4 (3)

Soft tissue problems or injuries

71

4 (3)

29 (25)

18 (15)

7 (6)

5 (4)

0 (0)

0 (0)

7 (6)

Stomach and bowel problems

34

5 (4)

12 (10)

10 (8)

3 (3)

1 (0.9)

0 (0)

0 (0)

3 (3)

  1. OI, osteogenesis imperfecta
  2. aQuestions 319, 321, 323, 324, 325, 327–345 “In the past 12 months, how has x impacted your life”, where x is any clinical sign, symptom or event participants reported to have experienced in the past 12 month in questions 318. Respondents chose a single answer option from a 5-level Likert scale “Not at all impacted–Severely impacted” and I don’t know, prefer not to say. bBased on responses to question 318. Percentages of affected individuals were calculated for the overall population of 118 adolescents for all but gynaecological problems, where percentages were calculated based on the number of girls (n = 57) in the survey