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Table 10 Impact of signs, symptoms and events in adults with OI (n = 1,440)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

157

27 (2)

60 (4)

48 (3)

16 (1)

3 (0.2)

2 (0.1)

0 (0)

1 (0.1)

Dental problems

626

166 (12)

238 (17)

151 (11)

51 (4)

15 (1)

1 (0.1)

1 (0.1)

3 (0.2)

Eye or vision problems

424

55 (4)

142 (10)

155 (11)

58 (4)

9 (0.6)

2 (0.1)

0 (0)

3 (0.2)

Fatigue

964

255 (18)

411 (29)

216 (15)

69 (5)

6 (0.4)

3 (0.2)

1 (0.1)

3 (0.2)

Fertility and reproductive problems

38

18 (1)

11 (0.8)

2 (0.1)

2 (0.1)

5 (0.3)

0 (0)

0 (0)

0 (0)

Fractures

394

103 (7)

152 (11)

86 (6)

36 (3)

11 (0.8)

3 (0.2)

1 (0.1)

2 (0.1)

Gynaecological and menstruation problem

174

33 (3)

68 (7)

49 (5)

16 (2)

5 (0.5)

1 (0.1)

2 (0.2)

0 (0)

Hearing problems

606

163 (11)

232 (16)

143 (10)

52 (4)

12 (0.8)

1 (0.1)

0 (0)

3 (0.2)

Heart problems

162

16 (1)

37 (3)

45 (3)

34 (2)

26 (2)

4 (0.3)

0 (0)

0 (0)

High blood pressure

344

27 (2)

96 (7)

118 (8)

61 (4)

39 (3)

0 (0)

1 (0.1)

2 (0.1)

Hypermobility

378

37 (3)

109 (8)

104 (7)

69 (5)

54 (4)

5 (0.3)

0 (0)

0 (0)

Joint problems

558

150 (10)

236 (16)

103 (7)

47 (3)

16 (1)

4 (0.3)

0 (0)

2 (0.1)

Kidney and bladder problems

190

24 (2)

71 (5)

57 (4)

27 (2)

8 (0.6)

1 (0.1)

0 (0)

2 (0.1)

Low/underweight

53

7 (0.5)

12 (0.8)

16 (1)

11 (0.8)

5 (0.4)

2 (0.1)

0 (0)

0 (0)

Lung or breathing problems

282

56 (4)

113 (8)

77 (5)

30 (2)

5 (0.3)

0 (0)

0 (0)

1 (0.1)

Mental health problems

584

187 (13)

267 (19)

110 (8)

19 (1)

0 (0)

1 (0.1)

0 (0)

0 (0)

Obesity/overweight

489

112 (8)

191 (13)

120 (8)

48 (3)

17 (1)

1 (0.1)

0 (0)

0 (0)

Pain

1,178

280 (19)

521 (36)

265 (18)

97 (7)

7 (0.5)

1 (0.1)

2 (0.1)

5 (0.3)

Problems with chewing, swallowing, and speaking

98

22 (2)

30 (2)

28 (2)

16 (1)

1 (0.1)

0 (0)

0 (0)

1 (0.1)

Scoliosis or other bone problems

672

158 (11)

303 (21)

147 (10)

46 (3)

10 (0.7)

6 (0.4)

0 (0)

2 (0.1)

Sexual problems

151

48 (3)

53 (4)

34 (2)

9 (0.6)

1 (0.1)

3 (0.2)

3 (0.2)

0 (0)

Sleep disturbance

655

174 (12)

301 (21)

143 (10)

29 (2)

4 (0.3)

1 (0.1)

1 (0.1)

2 (0.1)

Soft tissue problems or injuries

789

181 (13)

381 (27)

154 (11)

56 (4)

12 (0.8)

2 (0.1)

0 (0)

3 (0.2)

Stomach and bowel problems

501

81 (6)

197 (14)

150 (10)

59 (4)

11 (0.8)

0 (0)

1 (0.1)

2 (0.1)

  1. OI, osteogenesis imperfecta
  2. aQuestions 114, 116, 118–131 and 133–142 “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 113. 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 113. Percentages of affected individuals were calculated for the overall population of 1,440 adults for all but gynaecological problems, where percentages were calculated based on the number of women (n = 1,008) in the survey
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Orphanet Journal of Rare Diseases

ISSN: 1750-1172