Medical history* n (%)/events (rate per 100 person-years) | Subgroup | Overall | |
---|---|---|---|
Limb lengthening (N = 40) | No limb lengthening (N = 146) | N = 186 | |
Patient historical years | 663.0 | 1,721.6 | 2,384.6 |
Medical and surgical complications** | |||
≥ 1 general medical history | 35 (87.5%)/170 (25.6) | 128 (87.7%)/773 (44.9) | 163 (87.6%)/943 (39.5) |
Foramen magnum stenosis | 2 (5.0%)/2 (0.3) | 50 (34.2%)/56 (3.3) | 52 (28.0%)/58 (2.4) |
Gastroesophageal issues | 8 (20.0%)/8 (1.2) | 24 (16.4%)/48 (2.8) | 32 (17.2%)/56 (2.3) |
Genu varum/valgum | 3 (7.5%)/3 (0.5) | 37 (25.3%)/44 (2.6) | 40 (21.5%)/47 (2.0) |
Infections/infestations | 4 (10.0%)/8 (1.2) | 23 (15.8%)/45 (2.6) | 27 (14.5%)/53 (2.2) |
Other ENT issues (excluding otitis media) | 24 (60.0%)/58 (8.7) | 90 (61.6%)/261 (15.2) | 114 (61.3%)/319 (13.4) |
Other orthopaedic problems | 22 (55.0%)/44 (6.6) | 47 (32.2%)/119 (6.9) | 69 (37.1%)/163 (6.8) |
Otitis media | 1 (2.5%)/1 (0.2) | 11 (7.5%)/16 (0.9) | 12 (6.5%)/17 (0.7) |
Pain (any type) | 11 (27.5%)/25 (3.8) | 34 (23.3%)/66 (3.8) | 45 (24.2%)/91 (3.8) |
Spinal cord compression/stenosis | 10 (25.0%)/10 (1.5) | 37 (25.3%)/49 (2.8) | 47 (25.3%)/59 (2.5) |
Spinal deformities (kyphosis/lordosis) | 7 (17.5%)/11 (1.7) | 45 (30.8%)/69 (4.0) | 52 (28.0%)/80 (3.4) |
Surgical burdenb | |||
≥ 1 surgery/number of surgeries | 40 (100%)/223 (33.6) | 94 (64.4%)/290 (6.8) | 134 (72.0%)/513 (21.5) |
Brainstem decompression | 2 (5.0%)/2 (0.3) | 24 (16.4%)/24 (1.4) | 26 (14.0%)/26 (1.1) |
Limb lengthening | 40 (100%)/113 (17.0) | 0 | 40 (21.5%)/113 (4.7) |
Middle ear procedures | 6 (15.0%)/8 (1.3) | 37 (25.4%)/59 (3.3) | 43 (23.1%)/67 (2.8) |
Nerve decompression | 1 (2.5%)/1 (0.2) | 6 (4.1%)/7 (0.4) | 7 (3.8%)/8 (0.3) |
Shunt insertion | 2 (5.0%)/2 (0.3) | 5 (3.4%)/5 (0.3) | 7 (3.8%)/7 (0.3) |
Shunt revision | 0 | 4 (2.7%)/8 (0.5) | 4 (2.2%)/8 (0.3) |
Spinal correction | 2 (5.0%)/4 (0.6) | 8 (5.5%)/11 (0.6) | 10 (5.4%)/15 (0.6) |
Tonsillectomy/adenoidectomy | 10 (25.0%)/13 (2.0) | 39 (26.7%)/55 (3.2) | 49 (26.3%)/68 (2.9) |
Other | 24 (60.0%)/80 (12.1) | 58 (39.7%)/121 (7.0) | 82 (44.1%)/201 (8.4) |
Healthcare professional visits | |||
≥ 1 health care professional visit/number of visits | 16 (40.0%)/55 (8.3) | 97 (66.4%)/460 (26.7) | 113 (60.8%)/515 (21.6) |
Cardiologist | 0 | 4 (2.7%)/6 (0.3) | 4 (2.2%)/6 (0.3) |
Dentist | 1 (2.5%)/1 (0.2) | 2 (1.4%)/2 (0.1) | 3 (1.6%)/3 (0.1) |
Dermatologist | 1 (2.5%)/1 (0.2) | 3 (2.1%)/4 (0.2) | 4 (2.2%)/5 (0.2) |
Dietician | 0 | 4 (2.7%)/4 (0.2) | 4 (2.2%)/4 (0.2) |
ENT physician and/or surgeon | 4 (10.0%)/5 (0.8) | 24 (16.4%)/40 (2.3) | 28 (15.1%)/45 (1.9) |
Emergency Doctor | 0 | 5 (3.4%)/9 (0.5) | 5 (2.7%)/9 (0.4) |
Endocrinologist | 0 | 3 (2.1%)/7 (0.4) | 3 (1.6%)/7 (0.3) |
Gastroenterologist | 0 | 3 (2.1%)/5 (0.3) | 3 (1.6%)/5 (0.2) |
General practitioner | 4 (10.0%)/16 (2.4) | 23 (15.8%)/120 (7.0) | 27 (14.5%)/136 (5.7) |
Geneticist | 0 | 5 (3.4%)/7 (0.4) | 5 (2.7%)/7 (0.3) |
Gynaecologist | 0 | 3 (2.1%)/4 (0.2) | 3 (1.6%)/4 (0.2) |
Mental Health | 1 (2.5%)/1 (0.2) | 3 (2.1%)/3 (0.2) | 4 (2.2%)/4 (0.2) |
Neurologist | 1 (2.5%)/1 (0.2) | 8 (5.5%)/9 (0.5) | 9 (4.8%)/10 (0.4) |
Neuropediatric | 1 (2.5%)/1 (0.2) | 2 (1.4%)/12 (0.7) | 3 (1.6%)/13 (0.5) |
Neurosurgeon | 0 | 5 (3.4%)/6 (0.3) | 5 (2.7%)/6 (0.3) |
Occupational therapist | 1 (2.5%)/1 (0.2) | 5 (3.4%)/5 (0.3) | 6 (3.2%)/6 (0.3) |
Ophthalmologist | 2 (5.0%)/2 (0.3) | 7 (4.8%)/7 (0.4) | 9 (4.8%)/9 (0.4) |
Orthopaedic | 3 (7.5%)/6 (0.9) | 21 (14.4%)/30 (1.7) | 24 (12.9%)/36 (1.5) |
Paediatrician | 1 (2.5%)/1 (0.2) | 7 (4.8%)/56 (3.3) | 8 (4.3%)/57 (2.4) |
Physiotherapist | 7 (17.5%)/10 (1.5) | 52 (35.6%)/75 (4.4) | 59 (31.7%)/85 (3.6) |
Respiratory physician | 2 (5.0%)/3 (0.5) | 4 (2.7%)/5 (0.3) | 6 (3.2%)/8 (0.3) |
Speech therapist | 4 (10.0%)/4 (0.6) | 21 (14.4%)/27 (1.6) | 25 (13.4%)/31 (1.3) |
Other | 2 (5.0%)/2 (0.3) | 14 (9.6%)/17 (1.0) | 16 (8.6%)/19 (0.8) |
Medical or surgical examination | |||
≥ 1 medical or surgical examination/number of examinations | 40 (100%)/821 (123.8) | 145 (99.3%)/2,491(144.7) | 185 (99.5%)/3,312 (138.9) |
Audiology | 2 (5.0%)/3 (0.5) | 37 (25.3%)/82 (4.8) | 39 (21.0%)/85 (3.6) |
Cardiovascular | 6 (15.0%)/21 (3.2) | 36 (24.7%)/75 (4.4) | 42 (22.6%)/96 (4.0) |
ENT | 12 (30.0%)/31 (4.7) | 69 (47.3%)/323 (18.8) | 81 (43.5%)/354 (14.8) |
Gastrointestinal | 5 (12.5%)/12 (1.8) | 13 (8.9%)/30 (1.7) | 18 (9.7%)/42 (1.8) |
General surgical | 5 (12.5%)/24 (3.6) | 7 (4.8%)/17 (1.0) | 12 (6.5%)/41 (1.7) |
Neurological | 12 (30.0%)/46 (6.9) | 61 (41.8%)/257 (14.9) | 73 (39.2%)/303 (12.7) |
Orthopaedic | 23 (57.5%)/247 (37.3) | 78 (53.4%)/366 (21.3) | 101 (54.3%)/613 (25.7) |
Radiological | 32 (80.0%)/218 (32.9) | 98 (67.1%)/519 (30.1) | 130 (69.9%)/737 (30.9) |
Respiratory | 7 (17.5%)/10 (1.5) | 31 (21.1%)/79 (4.6) | 38 (20.4%)/89 (3.7) |
Urological | 1 (2.5%)/1 (0.2) | 10 (6.8%)/19 (1.1) | 11 (5.9%)/20 (0.8) |
Other | 24 (60.0%)/208 (31.4) | 108 (74.0%)/724 (42.1) | 132 (71.0%)/932 (39.1) |