Table 1 Description of the study sample according to respondent, No. (%), n = 584 (unless indicated)
| Ā | Adolescents | Parents | p* |
|---|---|---|---|
Socio-demographic characteristics | Ā | Ā | Ā |
Gender | Ā | Ā | Ā |
Female | 322 (55.1) | 303 (54.7) | Ā |
Male | 262 (44.9) | 251 (45.3) | - |
Age | Ā | Ā | Ā |
12-15 | 371 (63.5) | Ā | Ā |
16-19 | 213 (36.5) | - | - |
Mean (SD) | 14.9 (1.9) | Ā | Ā |
Educational level | Ā | Ā | Ā |
Lower | 326 (56.2) | 338 (59.7) | - |
Higher | 254 (43.8) | 228 (40.3) | Ā |
Education type** | Ā | Ā | Ā |
Regular | 526 (90.7) | - | - |
Special | 54 (9.3) | Ā | Ā |
Ethnicity | Ā | Ā | Ā |
Dutch surname | 526 (90.7) | - | - |
Non-Dutch surname | 54 (9.3) | Ā | Ā |
Disease-related characteristics | Ā | Ā | Ā |
Age at diagnosis | Ā | Ā | Ā |
0-5 yrs | 428 (73.3) | - | - |
ā„ 6 yrs | 156 (26.7) | Ā | Ā |
Number of visits of outpatient department | Ā | Ā | Ā |
Range | 1-111 | - | - |
Mean (SD) | 16.9 (15.4) | Ā | Ā |
Number of hospital admissions | Ā | Ā | Ā |
Range | 0-138 | - | - |
Mean (SD) | 4.9 (9.8) | Ā | Ā |
Number of different outpatient departments | Ā | Ā | Ā |
Range | 1-15 | - | - |
Mean (SD) | 3.1 (2.2) | Ā | Ā |
Consequences of chronic condition | Ā | Ā | Ā |
Presence therapeutic regimen | Ā | Ā | Ā |
Yes | 378 (64.7) | 386 (66.1) | ns |
Presence physical limitations | Ā | Ā | Ā |
Yes | 165 (28.3) | 133 (22.9) | < .01 |
School/work absenteeism | Ā | Ā | Ā |
Range | 1-5 | 1-5 | ns |
Mean (SD) | 1.9 (.90) | 1.9 (.85) | Ā |
Experienced burden | Ā | Ā | Ā |
Range | 2-10 | 2-10 | < .01 |
mean (SD) | 4.6 (2.1) | 5.2 (2.1) | Ā |