Table 12.
Impact of signs, symptoms and events in proxy children (n = 325)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 | 12 | 0 (0) | 4 (1) | 1 (0.3) | 2 (0.6) | 3 (0.9) | 1 (0.3) | 0 (0) | 1 (0.3) |
| Dental problems | 166 | 24 (7) | 63 (19) | 44 (14) | 13 (4) | 3 (0.9) | 1 (0.3) | 1 (0.3) | 18 (6) |
| Eye or vision problems | 69 | 6 (2) | 19 (6) | 20 (6) | 11 (3) | 4 (1) | 2 (0.6) | 2 (0.6) | 7 (2) |
| Fatigue | 170 | 26 (8) | 63 (19) | 46 (14) | 13 (4) | 2 (0.6) | 2 (0.6) | 0 (0) | 18 (6) |
| Fractures | 243 | 97 (30) | 87 (27) | 29 (9) | 5 (2) | 1 (0.3) | 1 (0.3) | 1 (0.3) | 23 (7) |
| Gynaecological and menstruation problems | 2 | 0 (0) | 1 (0.7) | 1 (0.7) | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 0 (0) |
| Hearing problems | 20 | 3 (0.9) | 3 (0.9) | 5 (2) | 2 (0.6) | 4 (1) | 0 (0) | 0 (0) | 3 (0.9) |
| Heart problems | 11 | 1 (0.3) | 1 (0.3) | 4 (1) | 1 (0.3) | 4 (1) | 0 (0) | 0 (0) | 0 (0) |
| High blood pressure | 1 | 0 (0) | 0 (0) | 1 (0.3) | 0 (0) | 0 (0) | 0 (0) | 0 (0) | 0 (0) |
| Hypermobility | 139 | 9 (3) | 47 (14) | 26 (8) | 15 (5) | 16 (5) | 5 (2) | 0 (0) | 21 (6) |
| Joint problems | 47 | 8 (2) | 12 (4) | 10 (3) | 9 (3) | 1 (0.3) | 1 (0.3) | 1 (0.3) | 5 (2) |
| Kidney and bladder problems | 18 | 0 (0) | 4 (1) | 10 (3) | 3 (0.9) | 0 (0) | 0 (0) | 0 (0) | 1 (0.3) |
| Low and underweight | 78 | 17 (5) | 19 (6) | 15 (5) | 9 (3) | 9 (3) | 0 (0) | 0 (0) | 9 (3) |
| Lung or breathing problems | 24 | 7 (2) | 10 (3) | 5 (1) | 1 (0.3) | 0 (0) | 1 (0.3) | 0 (0) | 0 (0) |
| Mental health problems | 86 | 20 (6) | 33 (10) | 14 (4) | 5 (2) | 0 (0) | 0 (0) | 0 (0) | 14 (4) |
| Obesity and overweight | 32 | 5 (2) | 11 (3) | 10 (3) | 1 (0.3) | 1 (0.3) | 0 (0) | 0 (0) | 4 (1) |
| Pain | 261 | 60 (18) | 108 (33) | 48 (15) | 12 (4) | 3 (0.9) | 2 (0.6) | 0 (0) | 28 (9) |
| Problems with chewing, swallowing, and speaking | 41 | 10 (3) | 11 (4) | 11 (4) | 5 (2) | 1 (0.3) | 0 (0) | 0 (0) | 3 (0.9) |
| Scoliosis or other bone problems | 105 | 27 (8) | 32 (10) | 21 (6) | 7 (2) | 5 (2) | 3 (0.9) | 0 (0) | 10 (3) |
| Sleep disturbance | 73 | 20 (6) | 27 (8) | 12 (4) | 4 (1) | 0 (0) | 0 (0) | 0 (0) | 10 (3) |
| Soft tissue problems or injuries | 132 | 16 (5) | 53 (16) | 33 (10) | 9 (3) | 1 (0.3) | 5 (2) | 0 (0) | 15 (5) |
| Stomach and bowel problems | 122 | 15 (5) | 43 (13) | 34 (10) | 11 (3) | 5 (2) | 1 (0.3) | 0 (0) | 13 (4) |
OI, osteogenesis imperfecta
aQuestions 188, 191, 193, 194, 195, 197–215 “In the past 12 months, how has x impacted your child’s life”, where x is any clinical sign, symptom or event participants reported to have experienced in the past 12 month in questions 187. 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 187. Percentages of affected individuals were calculated for the overall population of 325 children for all but gynaecological problems, where percentages were calculated based on the number of girls (n = 137) in the survey