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. 2024 Mar 21;19:128. doi: 10.1186/s13023-024-03126-9

Table 11.

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

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)

OI, osteogenesis imperfecta

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