Table 1.
Characteristics, medical and surgical treatment of children with register-identified inflammatory bowel disease (prevalent cases Dec 31st, 2010)
| Inflammatory Bowel Disease n = 1432 | Crohn’s Disease n = 548 | Ulcerative Colitis n = 585 | IBD-U n = 299 | |
|---|---|---|---|---|
| Boys, n (%) | 802 (56%) | 319 (58%) | 317 (54%) | 166 (56%) |
| Age (y); mean (SD) | ||||
| at identification | 10 (4) | 11 (4) | 10 (4) | 9 (4) |
| in 2010 | 14 (3) | 14 (3) | 14 (3) | 14 (3) |
| Age groups in 2010 | ||||
| 0–9 years d | 156 (11%) | 51 (9%) | 71 (12%) | 34 (11%) |
| 10–17 years | 1276 (89%) | 497 (91%) | 514 (88%) | 265 (89%) |
| Presence of diseases considered to be extra-intestinal manifestations | 281 (20%) | 115 (21%) | 91 (16%) | 75 (25%) |
| IBD-related in- and outpatient visits in 2010 | ||||
| Outpatient visits | 1199 (84%) | 451 (82%) | 492 (84%) | 256 (86%) |
| Inpatient visits | 310 (22%) | 128 (23%) | 121 (21%) | 61 (20%) |
| Major IBD-related surgery | ||||
| In 2010 | 35 (2%) | 23 (4%) | 7 (1%) | 5 (2%) |
| During 1993-2010c | 78 (5%) | 28 (5%) | 23 (4%) | 27 (9%) |
| Colectomy | 36 (3%) | 1 (0.2%) | 18 (3%) | 17 (6%) |
| Intestinal surgery | 45 (3%) | 27 (5%) | 5 (1%) | 13 (4%) |
| Rectal surgery | 6 (0.4%) | 1 (0.2%) | 2 (0.3%) | 3 (1%) |
| Minor bowel surgery | 83 (6%) | 58 (11%) | 6 (1%) | 19 (6%) |
| IBD-related drug treatment | ||||
| In 2010 | 1213 (85%) | 443 (80%) | 502 (86%) | 262 (88%) |
| Aminosalicylates | 1 065 (74%) | 370 (68%) | 472 (81%) | 223 (75%) |
| Steroids | 593 (41%) | 203 (37%) | 257 (44%) | 133 (44%) |
| Immunosuppressants (incl. biologics) a | 666 (47%) | 307 (56%) | 209 (36%) | 150 (50%) |
| During 2005-2010b | 1333 (93%) | 500 (91%) | 541 (92%) | 292 (98%) |
IBD = inflammatory bowel disease; Patients required to have at least two listings of the selected diagnoses to be defined as a case; Differential diagnosis defined as Behcet’s disease, irritable bowel syndrome, intestinal tuberculosis, amoebic colitis, celiac disease, diverticulitis, ischemic colitis, non-infective colitis, radiation damage, and infectious/bacterial colitis. Diseases with main focus on those considered to be extra-intestinal manifestations were defined as rheumatic, dermatologic, hepatobiliary and pancreatic diseases and were based on the World Gastroenterology Organization Practice Guidelines for the diagnosis and management of IBD and/or the treatment guidelines for IBD from the Swedish Association of Gastroenterology [22, 29]. Major IBD-related surgery defined as total colectomy, partial excision of intestine, and partial excision of rectum; IBD-related drug treatment defined as dispensed prescription of aminosalicylates, corticosteroids, immune modifiers, and biologics; Codes used for physician-diagnosed and comorbid conditions considered to be extra-intestinal manifestations are available in the SDC, Additional file 5: Table S5; Codes used in this analysis are available above in Additional file 3: Table S3 (surgical procedures) and Additional file 4: Table S4 (dispensed prescription drugs); Numbers do not sum up as overlap between the groups e.g., colectomy and intestinal surgery or steroids and immunosuppressants were possible
aInfusion biologics are covered to a lesser extent in the Prescribed Drug Register (e.g., about 20% of infliximab use in 2009) [21]; Given that infusion biologics are covered to a lesser extent, this number should be interpreted with caution
bData from the Prescribed Drug Register only available since 2005 onwards
cNote that surgery after the 18th birthday is not counted and that only a minority of patients in the sample have been followed for >4 years at their 18th birthday
dEarly onset defined as with a diagnosis before 10 years of age [14]