Background
Methods
Study design and population
Medical records
Self-reported data
Evaluation of the quality of life
Statistical analysis
Results
Population
1. Characteristics at the time of response | N = 32 | |
---|---|---|
Gender | Girls n (%) | 11 (34.4) |
Boys n (%) | 21 (65.6) | |
Age (yrs) | M±SD | 6.7 ± 3.3 |
m (min/max) | 5.8 (2.6/13.8) | |
Current BMI z-score | M±SD | −1.4 ± 1.5 |
m (min/max) | −2,1(−4,0/2,2) | |
CDH side | Left n (%) | 27 (84.4) |
Right n (%) | 5 (15.6) | |
2. Antenatal and neonatal data
| ||
Prenatal diagnosis | Yes n (%) | 19 (59.4) |
Birth weight (g) | M±SD | 2996 ± 709 |
m (min/max) | 3100 (900/4000) | |
Term (WOG) | M±SD | 38.2 ± 2.9 |
m (min/max) | 39 (27/41) | |
Birth weight z-score | M±SD | −0.5 ± 0.7 |
m (min/max) | 0.6(−2.2/1.2) | |
Caesarean | Yes n (%) | 10 (31.3) |
Surfactant | Yes n (%) | 13 (40.6) |
MV Duration (d) | M±SD | 13.0 ± 12.2 |
m (min/max) | 10(1/57) | |
HFO | Yes n (%) | 24 (75.0) |
Duration (d) | M±SD | 13.1 ± 13.2 |
m (min/max) | 9 (1/57) | |
Amines | Yes n (%) | 23 (71.9) |
Duration (d) | M±SD | 7.4 ± 5.2 |
m (min/max) | 6 (1–26) | |
NO | Yes n (%) | 19 (59.4) |
Duration (d) | M±SD | 6.9 ± 7.0 |
m (min/max) | 4 (1–25) | |
Sedation (d) | M±SD | 10.7 ± 12.5 |
m (min-max) | 6 (1/57) | |
ICU LOS (d) | M±SD | 18.6 ± 18.3 |
m (min/max) | 14 (3/92) | |
CDH repair (day of life) | M±SD | 2.7 ± 2.3 |
m (min/max) | 1(1/12) | |
Surgery | Simple | 27 (84.4) |
Others | 5 (15.6) | |
Hospital LOS (d) | M±SD | 40.2 ± 34.0 |
m (min/max) | 28(10/140) | |
Weight at discharge (g) | M±SD | 3569 ± 829 |
m (min/max) | 3380 (1545/4855) | |
GER at discharge | Yes n(%) | 14 (43.8) |
Initial management and current clinical problems
n (%) | |
---|---|
Digestive symptoms (total) | 11 (34.4) |
Vomiting | 3 (9.3) |
Gastro-oesophageal reflux | 2 (6.3) |
Constipation | 3 (9.3) |
Diarrhea | 1 (3.1) |
Abdominal pain | 3 (9.3) |
Medical treatment | 3 (9.3) |
Respiratory symptoms (total) | 7 (21.9) |
Dyspnea at rest | 2 (6.3) |
Exertional dyspnea | 3 (9.3) |
Nocturn dyspnea | 1 (3.2) |
Pain chest | 0 (0) |
Respiratory treatment | 2 (6.3) |
Repeated respiratory tract infection | 4 (12.5) |
Hospitalisation for respiratory trouble | 3 (9.3) |
Neuropsychologic symptoms (total) | 8 (26.7) |
Cerebral palsy | 1 (3.1) |
Mental retardation | 1 (3.1) |
Neurological following | 1 (3.1) |
Psychological following | 7 (21.8) |
Orthopedic symptoms (total) | 4 (12.5) |
Difficult walking | 2 (6.3) |
Kinesitherapy | 2 (6.3) |
Orthopedic treatment | 1 (3.2) |
Total | 21 (65.6) |
1. Children | CHD | LEA | Norms |
---|---|---|---|
Children’ QoL: Kidscreen-27 (0–100)*
|
M ± SD
|
Diff (95% CI)
+
|
Diff (95% CI)
++
|
Physical well-being | 53.4 ± 10.7 | 5,9 (1,7 ; 10,1) | −11,6 (−15,6 ; -7,63) |
Psychological well-being | 53.4 ± 9.5 | 2,3 (−1,5 ; 6,3) | −23,8 (−27,2 ; -20,3) |
Parents and autonomy | 47.3 ± 7.9 | −0, (−5,4 ; 3,5) | −14,3 (−17,4 ; -11,1) |
Peers and social support | 44.5 ± 9.5 | 0,1 (−5,0 ; 5,3) | −16,3 (−19,8 ; -12,8) |
School | 53.5 ± 10.0 | 3,0 (−1,2 ; 7,3) | −13,2 (−17,0 ; -9,44) |
Children’ behavioral : SDQ
|
M ± SD
| ||
Emotional symptoms | 3.0 ± 2.7 | - | - |
Conduct problems | 2.5 ± 1.7 | - | - |
Hyperactivity | 4.1 ± 2.4 | - | - |
Peer problems | 1.6 ± 2.4 | - | - |
Prosocial | 8.2 ± 1.5 | - | - |
Total difficulties | 11.3 ± 5.7 | - | - |
2. Parents
| |||
Parents’ QoL: SF36 (0–100)*
|
M ± SD
| ||
Physical function | 92.5 ± 13.2 | - | - |
Social functioning | 86.7 ± 19.1 | - | - |
Role physical | 89.9 ± 15.3 | - | - |
Role emotional | 63.2 ± 9.1 | - | - |
Mental health | 71.4 ± 14.2 | - | - |
Vitality | 71.7 ± 17.0 | - | - |
Body pain | 83.8 ± 22.5 | - | - |
General health | 79.7 ± 17.3 | - | - |
Physical composite score | 55.9 ± 6.1 | - | - |
Mental composite score | 46.7 ± 5.6 | - | - |
Quality of life of CDH survivors
Factors modulating the quality of life in CDH survivors
Modulation of children’s QoL
PhWB | PsWB | ParAu | PSS | Sch | ||
---|---|---|---|---|---|---|
Antenatal diagnosis*
|
Yes
| 50.0 ± 9.2 | 49.0 ± 6.6 | 45.0 ± 8.9 | 44.2 ± 10.6 | 51.0 ± 9.0 |
No
| 58.8 ± 11.0 | 60.3 ± 9.6 | 50.5 ± 5.3 | 45.1 ± 7.8 | 57.3 ± 10.6 | |
p
| 0.056 |
0.003
|
0.035
| 0.613 | 0.114 | |
GER at discharge*
|
Yes
| 49.9 ± 10.3 | 48.9 ± 7.5 | 43.7 ± 8.1 | 40.5 ± 10.0 | 50.7 ± 8.4 |
No
| 56.2 ± 10.4 | 57.0 ± 9.7 | 50.7 ± 6.2 | 48.0 ± 7.9 | 55.8 ± 10.8 | |
p
| 0.095 |
0.016
|
0.009
|
0.013
| 0.213 | |
Age**
|
Coeff
| −0.057 | −0.020 | 0.099 | 0.358 | 0.047 |
p
| 0.762 | 0.914 | 0.639 | 0.062 | 0.807 | |
ICU LOS**
|
Coeff
| −0.249 | −0.397 | −0.062 | 0.374 | −0.281 |
p
| 0.184 |
0.03
| 0.772 | 0.055 | 0.140 | |
Current respiratory problems*
|
Yes
| 48.3 ± 12.5 | 53.6 ± 10.5 | 42.2 ± 7.7 | 38.2 ± 7.5 | 56.6 ± 12.3 |
No
| 54.85 ± 9.9 | 53.28 ± 9.5 | 49.02 ± 7.4 | 46.66 ± 9.3 | 52.78 ± 9.5 | |
p
| 0.068 | 0.924 | 0.074 |
0.031
| 0.334 | |
Current digestive problems*
|
Yes
| 51.9 ± 9.3 | 51.2 ± 7.2 | 48.5 ± 7.9 | 45.9 ± 12.1 | 51.9 ± 5.9 |
No
| 54.2 ± 11.5 | 54.5 ± 10.6 | 46.8 ± 8.09 | 43.7 ± 7.69 | 54.4 ± 11.6 | |
p
| 0.572 | 0.504 | 0.600 | 0.832 | 0.506 | |
Current neuropsychological problems*
|
Yes
| 47.3 ± 8.9 | 51.5 ± 9.1 | 41.3 ± 6.6 | 39.8 ± 8.0 | 48.4 ± 9.2 |
No
| 54.9 ± 10.3 | 54.2 ± 10.3 | 48.3 ± 6.8 | 44.9 ± 8.8 | 55.5 ± 10.3 | |
p
| 0.051 | 0.657 |
0.042
| 0.200 | 0.101 |
Parents’ quality of life
Modulation of parents’ QoL
PF | SF | RP | RE | MH | Vi | BP | GH | PCS | MCS | ||
---|---|---|---|---|---|---|---|---|---|---|---|
Antenatal diagnosis*
|
Yes
| 91.5 ± 15.7 | 82.6 ± 22.3 | 87.5 ± 16.2 | 61.6 ± 10.4 | 68.5 ± 13.9 | 67.4 ± 16.3 | 80.4 ± 23.8 | 75.0 ± 18.9 | 55.0 ± 6.7 | 45.1 ± 5.7 |
No
| 93.8 ± 9.2 | 92.3 ± 12.0 | 93.3 ± 13.8 | 65.4 ± 6.7 | 75.8 ± 14.1 | 78.1 ± 16.5 | 88.5 ± 20.6 | 86.8 ± 12.1 | 57.3 ± 5.1 | 49.0 ± 4.9 | |
p
| 0.683 | 0.301 | 0.185 | 0.508 | 0.134 | 0.072 | 0.245 | 0.085 | 0.290 |
0.038
| |
Surgery*
|
Simple
| 92.8 ± 14.1 | 87.8 ± 19.2 | 91.8 ± 14.0 | 62.2 ± 8.6 | 71.1 ± 14.9 | 72.0 ± 18.0 | 87.1 ± 21.8 | 80.8 ± 16.0 | 56.9 ± 5.6 | 46.3 ± 5.9 |
Others
| 91.0 ± 8.2 | 85.0 ± 20.5 | 80.0 ± 19.5 | 68.3 ± 10.9 | 73.0 ± 11.0 | 70.0 ± 12.0 | 66.4 ± 19.6 | 74.0 ± 24.1 | 51.1 ± 7.0 | 48.7 ± 4.3 | |
p
| 0.238 | 0.637 | 0.091 | 0.329 | 0.955 | 0.933 |
0.014
| 0.655 |
0.048
| 0.254 | |
GER at discharge*
|
Yes
| 93,7 ± 3,2 | 83,0 ± 6,2 | 87,0 ± 3,7 | 60,7 ± 2,8 | 69,8 ± 3,6 | 66,9 ± 3,4 | 84,1 ± 6,7 | 70,8 ± 5,0 | 55,2 ± 1,6 | 45,0 ± 1,4 |
No
| 91,5 ± 3,5 | 89,7 ± 3,6 | 92,3 ± 4,0 | 65,2 ± 1,8 | 72,8 ± 3,8 | 75,78 ± 4,9 | 83,5 ± 5,1 | 87,4 ± 3,0 | 56,5 ± 1,6 | 48,1 ± 1,4 | |
p
| 0,848 | 0,711 |
0,029
| 0,304 | 0,487 | 0,159 | 0,794 |
0,008
| 0,339 |
0,042
| |
Age**
|
Coeff
| −0.378 | −0.174 | 0.212 | −0.262 | −0.204 | −0.132 | −0.142 | −0.110 | −0.147 | −0.154 |
p
|
0.036
| 0.348 | 0.252 | 0.155 | 0.281 | 0.488 | 0.446 | 0.564 | 0.437 | 0.417 | |
ICU LOS**
|
Coeff
| −0.019 | −0.201 | −0.417 | −0.111 | −0.023 | −0.189 | −0.291 | −0.289 | −0.350 | −0.042 |
p
| 0.919 | 0.286 |
0.022
| 0.558 | 0.904 | 0.325 | 0.118 | 0.128 | 0.063 | 0.829 | |
Current respiratory problems*
|
Yes
| 87,0 ± 19,0 | 71,4 ± 25,7 | 87,5 ± 19,1 | 63,1 ± 6,6 | 72,9 ± 15,2 | 64,3 ± 13,8 | 68,1 ± 32,2 | 63,9 ± 24,8 | 50,8 ± 8,6 | 45,9 ± 5,0 |
No
| 94,1 ± 11,0 | 91,1 ± 14,5 | 90,6 ± 14,4 | 63,2 ± 9,8 | 71,0 ± 14,2 | 73,9 ± 17,4 | 88,3 ± 17,2 | 84,5 ± 11,2 | 57,5 ± 4,3 | 46,9 ± 5,9 | |
p
| 0,068 |
0,038
| 0,980 | 0,958 | 0,637 | 0,399 | 0,147 |
<0.001
| 0,059 | 0,391 | |
Current digestive problems*
|
Yes
| 90,4 ± 14,3 | 83,8 ± 22,0 | 90,0 ± 15,3 | 65,0 ± 9,5 | 65,8 ± 17,1 | 70,6 ± 15,6 | 78,7 ± 27,0 | 76,1 ± 15,8 | 55,1 ± 5,8 | 45,4 ± 6,7 |
No
| 93,5 ± 12,8 | 88,1 ± 17,8 | 89,9 ± 15,6 | 62,3 ± 8,98 | 74,3 ± 11,9 | 72,2 ± 17,9 | 86,2 ± 20,3 | 81,5 ± 18,1 | 56,3 ± 6,35 | 47,3 ± 5,13 | |
p
| 0,248 | 0,642 | 0,787 | 0,727 | 0,174 | 0,824 | 0,342 | 0,320 | 0,356 | 0,509 | |
Current neuropsychological problems*
|
Yes
| 96,3 ± 5,2 | 90,6 ± 18,6 | 90,6 ± 10,0 | 62,5 ± 14,1 | 70,3 ± 11,1 | 68,8 ± 14,2 | 88,6 ± 20,6 | 70,5 ± 18,7 | 56,2 ± 6,0 | 46,0 ± 5,7 |
No
| 92,7 ± 13,3 | 86,3 ± 19,7 | 91,1 ± 15,1 | 63,9 ± 6,6 | 72,5 ± 15,3 | 74,1 ± 18,2 | 80,4 ± 23,8 | 83,5 ± 16,6 | 56,0 ± 6,5 | 47,3 ± 5,7 | |
p
| 0,751 | 0,396 | 0,348 | 0,914 | 0,367 | 0,400 | 0,384 | 0,055 | 0,959 | 0,476 |