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Table 11 Impact of signs, symptoms and events in adolescents (n = 92)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

10

0 (0)

4 (4)

2 (2)

4 (4)

0 (0)

0 (0)

0 (0)

0 (0)

Dental problems

33

3 (3)

11 (12)

12 (13)

4 (4)

2 (2)

0 (0)

0 (0)

1 (1)

Eye or vision problems

25

2 (2)

8 (9)

8 (9)

5 (5)

1 (1)

0 (0)

0 (0)

1 (1)

Fatigue

60

9 (10)

24 (26)

18 (20)

6 (7)

1 (1)

1 (1)

0 (0)

1 (1)

Fractures

38

6 (7)

14 (15)

13 (14)

3 (3)

0 (0)

1 (1)

0 (0)

1 (1)

Gynaecological and menstruation problems

12

1 (2)

5 (10)

3 (6)

1 (2)

2 (4)

0 (0)

0 (0)

0 (0)

Hearing problems

10

0 (0)

4 (4)

2 (2)

2 (2)

1 (1)

0 (0)

0 (0)

1 (1)

Heart problems

6

0 (0)

2 (2)

3 (3)

0 (0)

1 (1)

0 (0)

0 (0)

0 (0)

High blood pressure

1

0 (0)

0 (0)

0 (0)

0 (0)

1 (1)

0 (0)

0 (0)

0 (0)

Hypermobility

32

0 (0)

10 (11)

12 (13)

6 (7)

4 (4)

0 (0)

0 (0)

0 (0)

Joint problems

14

1 (1)

3 (3)

7 (8)

1 (1)

2 (2)

0 (0)

0 (0)

0 (0)

Kidney and bladder problems

7

1 (1)

1 (1)

1 (1)

2 (2)

2 (2)

0 (0)

0 (0)

0 (0)

Low and underweight

15

3 (3)

2 (2)

1 (1)

4 (4)

5 (5)

0 (0)

0 (0)

0 (0)

Lung or breathing problems

18

3 (3)

6 (7)

6 (7)

3 (3)

0 (0)

0 (0)

0 (0)

0 (0)

Mental health problems

42

18 (20)

18 (20)

4 (4)

2 (2)

0 (0)

0 (0)

0 (0)

0 (0)

Obesity and overweight

15

6 (7)

3 (3)

6 (6)

0 (0)

0 (0)

0 (0)

0 (0)

0 (0)

Pain

75

10 (11)

34 (37)

21 (23)

8 (9)

1 (1)

0 (0)

0 (0)

1 (1)

Problems with chewing, swallowing, and speaking

5

0 (0)

2 (2)

2 (2)

0 (0)

1 (1)

0 (0)

0 (0)

0 (0)

Scoliosis or other bone problems

55

13 (14)

23 (25)

9 (10)

4 (4)

5 (5)

0 (0)

0 (0)

1 (1)

Sleep disturbance

27

6 (7)

9 (10)

6 (7)

3 (3)

2 (2)

0 (0)

0 (0)

1 (1)

Soft tissue problems or injuries

33

6 (7)

14 (15)

11 (12)

2 (2)

1 (1)

0 (0)

0 (0)

0 (0)

Stomach and bowel problems

30

3 (3)

7 (8)

10 (11)

8 (9)

1 (1)

0 (0)

0 (0)

1 (1)

  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. b Based on responses to question 318. Percentages of affected individuals were calculated for the overall population of 92 adolescents for all but gynaecological problems, where percentages were calculated based on the number of girls (n = 51) in the survey
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Orphanet Journal of Rare Diseases

ISSN: 1750-1172