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Table 14 Impact of signs, symptoms and events in proxy adults (n = 85)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

4

1 (1)

0 (0)

1 (1)

0 (0)

0 (0)

2 (2)

0 (0)

0 (0)

Dental problems

35

9 (11)

16 (19)

8 (9)

1 (1)

0 (0)

0 (0)

0 (0)

1 (1)

Eye or vision problems

16

0 (0)

5 (6)

8 (9)

3 (4)

0 (0)

0 (0)

0 (0)

0 (0)

Fatigue

47

8 (9)

21 (25)

12 (14)

2 (2)

0 (0)

0 (0)

0 (0)

4 (5)

Fractures

26

4 (5)

14 (16)

2 (2)

1 (1)

1 (1)

1 (1)

0 (0)

3 (4)

Gynaecological and menstruation problems

7

1 (3)

5 (13)

0 (0)

0 (0)

0 (0)

0 (0)

0 (0)

1 (3)

Hearing problems

12

1 (1)

6 (7)

0 (0)

3 (4)

1 (1)

0 (0)

0 (0)

1 (1)

Heart problems

1

1 (1)

0 (0)

0 (0)

0 (0)

0 (0)

0 (0)

0 (0)

0 (0)

High blood pressure

7

0 (0)

4 (5)

1 (1)

2 (2)

0 (0)

0 (0)

0 (0)

0 (0)

Hypermobility

21

0 (0)

6 (7)

9 (11)

3 (4)

1 (1)

0 (0)

0 (0)

2 (2)

Joint problems

15

2 (2)

7 (8)

4 (5)

1 (1)

0 (0)

0 (0)

0 (0)

1 (1)

Kidney and bladder problems

4

1 (1)

2 (2)

0 (0)

1 (1)

0 (0)

0 (0)

0 (0)

0 (0)

Low and underweight

8

3 (4)

0 (0)

1 (1)

0 (0)

3 (4)

0 (0)

0 (0)

1 (1)

Lung or breathing problems

12

5 (6)

4 (5)

3 (4)

0 (0)

0 (0)

0 (0)

0 (0)

0 (0)

Mental health problems

31

12 (14)

11 (13)

5 (6)

1 (1)

0 (0)

0 (0)

0 (0)

2 (2)

Obesity and overweight

24

7 (8)

9 (11)

6 (7)

2 (2)

0 (0)

0 (0)

0 (0)

0 (0)

Pain

72

17 (20)

30 (35)

11 (13)

6 (7)

0 (0)

1 (1)

0 (0)

7 (8)

Problems with chewing, swallowing, and speaking

11

4 (5)

4 (5)

0 (0)

2 (2)

1 (1)

0 (0)

0 (0)

0 (0)

Scoliosis or other bone problems

38

17 (20)

10 (12)

6 (7)

2 (2)

1 (1)

0 (0)

0 (0)

2 (2)

Sleep disturbance

30

5 (6)

18 (21)

5 (6)

1 (1)

0 (0)

0 (0)

0 (0)

1 (1)

Soft tissue problems or injuries

37

3 (4)

16 (19)

9 (11)

2 (2)

1 (1)

2 (2)

0 (0)

4 (5)

Stomach and bowel problems

21

4 (5)

9 (11)

4 (5)

2 (2)

0 (0)

0 (0)

0 (0)

2 (2)

  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 85 adults for all but gynaecological problems, where percentages were calculated based on the number of women (n = 39) in the survey