Background
Methods
The parents and their children
Questionnaire
Ethics
Statistics
Results
Participant and patient characteristics
Entire cohort (n = 102) | Study participants (n = 35) | Non-participants (n = 67) | ||
---|---|---|---|---|
Declined or excluded (n = 42) | Deceased (n = 25) | |||
Gender | ||||
Male | 67 (66) | 21 (60) | 26 (60) | 20 (80) |
Female | 35 (34) | 14 (40) | 16 (38) | 5 (20) |
Prenatal diagnosis | 31 (30) | 8 (23) | 7 (17) | 16 (64)* |
Birth weight (kg) (mean ± SD) | 3.4 ± 0.62 | 3.5 ± 0.58 | 3.3 ± 0.66 | 3.2 ± 0.58 |
Gestational age (weeks) (mean ± SD) | 38 ± 2 | 39 ± 2 | 39 ± 3 | 37 ± 2 |
Side of lesion | ||||
Left | 74 (73) | 29 (83) | 32 (76) | 13 (52)* |
Right | 14 (14) | 4 (11) | 6 (14) | 4 (16) |
Bilateral | 1 (1) | 0 (0) | 0 (0) | 1 (4) |
Repaired | ||||
Primary | 58 (57) | 24 (69) | 30 (71) | 4 (16) |
Patch | 26 (25) | 8 (23) | 7 (17) | 11 (44) |
Intubated within 6 h from birth | 73 (72) | 21 (60) | 28 (67) | 24 (96)* |
ECMO | 29 (28) | 6 (17) | 6 (14) | 17 (68)* |
ECMO > once | 5 (5) | 1 (3) | 0 (0) | 4 (17) |
Referred to other hospital | 24 (24) | 11 (31) | 9 (21) | 4 (17) |
Survival to discharge | 84 (82)* | 35 (100) | 42 (100) | 7 (28) |
Long-term survivors (2012) | 77 (75)* | 35 (100) | 42 (100) | 0 (0) |
Results from the KIDSCREEN-52 (long version) questionnaire
Scale | Children with CDH | Reference | T test | |||
---|---|---|---|---|---|---|
Mean | SD |
n
| Norm-mean | Norm-SD | p value | |
Physical well-being | 49.5 | 8.36 | 35 | 50 | 10 | 0.728 |
Psychological well-being | 52.4 | 8.66 | 35 | 50 | 10 | 0.121 |
Moods and emotions | 53.3 | 10.81 | 35 | 50 | 10 | 0.087 |
Self-perception | 56.4 | 10.76 | 35 | 50 | 10 | 0.002* |
Autonomy | 54.0 | 8.52 | 35 | 50 | 10 | 0.010* |
Parent relation and home life | 53.8 | 9.66 | 35 | 50 | 10 | 0.030* |
Financial resources | 55.5 | 8.72 | 35 | 50 | 10 | 0.001* |
Social support and peers | 52.1 | 9.30 | 35 | 50 | 10 | 0.192 |
School environment | 54.6 | 11.29 | 35 | 50 | 10 | 0.025* |
Bullying | 52.5 | 9.03 | 35 | 50 | 10 | 0.109 |
Scale | Children with CDH | Reference | T test | |||
---|---|---|---|---|---|---|
Mean | SD |
n
| Norm-mean | Norm-SD | p value | |
Physical well-being | 50.5 | 7.72 | 23 | 50.3 | 7.72 | 0.472 |
Psychological well-being | 53.5 | 9.20 | 23 | 51.5 | 9.20 | 0.171 |
Moods and emotions | 54.3 | 11.54 | 23 | 53.3 | 11.54 | 0.327 |
Self-perception | 53.9 | 10.39 | 23 | 53.7 | 10.39 | 0.339 |
Autonomy | 55.2 | 8.95 | 23 | 52.7 | 8.95 | 0.107 |
Parent relation ad home life | 53.1 | 10.91 | 23 | 53.3 | 10.91 | 0.918 |
Financial resources | 56.9 | 8.59 | 23 | 53.4 | 8.59 | 0.040 |
Social support and peers | 53.2 | 9.28 | 23 | 52.0 | 9.28 | 0.397 |
School environment | 54.5 | 11.51 | 23 | 51.3 | 11.51 | 0.211 |
Bullying | 54.2 | 8.44 | 23 | 53.3 | 8.44 | 0.323 |
ICC | Lower | Upper | Mean child | Mean parent | p value | |
---|---|---|---|---|---|---|
Physical well-being | 0.652 | 0.380 | 0.821 | 49.6 | 49.5 | 0.122 |
Psychological well-being | 0.403 | 0.058 | 0.663 | 51.8 | 48.9 | 0.364 |
Moods and emotions | 0.376 | 0.020 | 0.646 | 52.7 | 54.4 | 0.562 |
Self-perception | 0.537 | 0.224 | 0.751 | 55.4 | 56.2 | 0.295 |
Autonomy | 0.548 | 0.238 | 0.756 | 53.2 | 57.1 | 0.565 |
Parent relation and home life | 0.731 | 0.511 | 0.862 | 54.6 | 55.1 | 0.299 |
Financial resources | 0.388 | 0.047 | 0.651 | 59.6 | 59.3 | 0.219 |
Social support and peers | 0.727 | 0.501 | 0.860 | 51.3 | 50.7 | 0.666 |
School environment | 0.739 | 0.519 | 0.867 | 54.2 | 52.1 | 0.909 |
Bullying | 0.647 | 0.379 | 0.815 | 58.8 | 58.8 | 0.489 |
Physical well-being | Psychological well-being | Moods and emotions | Self-perception | Autonomy | |||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
M
| SD |
N
|
M
| SD |
N
|
M
| SD |
N
|
M
| SD |
N
|
M
| SD |
N
| |
Time for intubation | |||||||||||||||
0–6 h | 47.7 | 7.4 | 20 | 52.2 | 8.1 | 20 | 53.1 | 11.5 | 20 | 58.3 | 10.0 | 20 | 54.5 | 9.0 | 20 |
>6 h | 52.1 | 9.7 | 12 | 53.4 | 7.5 | 12 | 54.7 | 10.1 | 12 | 56.5 | 11.0 | 12 | 55.1 | 8.0 | 12 |
Missing | 50.2 | 7.7 | 3 | 49.2 | 17.5 | 3 | 48.8 | 12.0 | 3 | 43.5 | 7.4 | 3 | 46.8 | 5.8 | 3 |
ECMO | |||||||||||||||
No | 50.6 | 7.6 | 29 | 53.1 | 7.9 | 29 | 54.2 | 9.9 | 29 | 56.1 | 10.4 | 29 | 54.9 | 7.5 | 29 |
Yes | 43.1 | 10.6 | 6 | 48.8 | 11.7 | 6 | 49.1 | 14.8 | 6 | 57.5 | 13.6 | 6 | 49.8 | 12.1 | 6 |
Side of lesion | |||||||||||||||
Right | 46.1 | 12.0 | 4 | 49.8 | 14.2 | 4 | 48.4 | 16.4 | 4 | 53.2 | 11.6 | 4 | 53.2 | 11.3 | 4 |
Left | 49.8 | 7.9 | 29 | 53.2 | 7.4 | 29 | 54.2 | 9.9 | 29 | 57.7 | 10.3 | 29 | 54.0 | 7.8 | 29 |
Missing | 52.0 | 10.3 | 2 | 45.9 | 16.6 | 2 | 50.5 | 16.4 | 2 | 43.5 | 12.2 | 2 | 55.4 | 18.9 | 2 |
Prenatal diagnosis | |||||||||||||||
Yes | 49.7 | 11.0 | 7 | 52.4 | 11.6 | 7 | 49.4 | 13.8 | 7 | 56.7 | 12.9 | 7 | 53.5 | 11.2 | 7 |
No | 49.4 | 7.8 | 28 | 52.4 | 8.0 | 28 | 54.3 | 10.0 | 28 | 56.3 | 10.4 | 28 | 54.2 | 7.9 | 28 |
Parent relation and home life | Financial resources | Social support and peers | School environment | Bullying | |||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
M
| SD |
N
|
M
| SD |
N
|
M
| SD |
N
|
M
| SD |
N
|
M
| SD |
N
| |
Time for intubation | |||||||||||||||
0–6 h | 56.0 | 8.6 | 20 | 57.5 | 7.0 | 20 | 52.1 | 9.4 | 20 | 54.6 | 10.4 | 20 | 51.6 | 10.6 | 20 |
>6 h | 53.6 | 9.8 | 12 | 54.4 | 9.2 | 12 | 53.0 | 10.5 | 12 | 57.7 | 11.4 | 12 | 54.8 | 6.2 | 12 |
Missing | 40.4 | 5.1 | 3 | 47.4 | 14.1 | 3 | 48.4 | 1.8 | 3 | 41.5 | 9.7 | 3 | 49.7 | 8.4 | 3 |
ECMO | |||||||||||||||
No | 54.3 | 9.9 | 29 | 55.1 | 8.8 | 29 | 53.6 | 9.2 | 29 | 55.6 | 10.3 | 29 | 53.5 | 8.1 | 29 |
Yes | 51.2 | 8.9 | 6 | 57.1 | 9.2 | 6 | 45.2 | 6.3 | 6 | 49.8 | 15.5 | 6 | 48.0 | 12.4 | 6 |
Side of lesion | |||||||||||||||
Right | 51.1 | 10.8 | 4 | 54.2 | 5.9 | 4 | 46.4 | 7.9 | 4 | 45.1 | 11.9 | 4 | 49.2 | 13.1 | 4 |
Left | 54.9 | 9.3 | 29 | 56.1 | 8.4 | 29 | 52.8 | 9.6 | 29 | 56.1 | 9.4 | 29 | 53.0 | 8.8 | 29 |
Missing | 42.6 | 9.8 | 2 | 49.0 | 19.6 | 2 | 54.2 | 5.6 | 2 | 52.1 | 30.6 | 2 | 53.5 | 7.6 | 2 |
Prenatal diagnosis | |||||||||||||||
Yes | 59.4 | 6.9 | 7 | 56.4 | 8.6 | 7 | 50.6 | 12.6 | 7 | 51.5 | 15.9 | 7 | 51.0 | 11.0 | 7 |
No | 52.3 | 9.8 | 28 | 55.2 | 8.9 | 28 | 52.5 | 8.5 | 28 | 55.4 | 10.0 | 28 | 53.0 | 8.6 | 28 |