Factors of family impact in a Swedish–German cohort of children born with esophageal atresia

Table 1 Study population characteristics and descriptives of PedsQL™ family impact module

Child clinical and psychosocial characteristics	n_replies	n (%)	Mean (SD)
Congenital characteristics
Prematurity, gestational age < 37 weeks	171	67 (39)
Low birth weight, birth weight < 2500 g	169	67 (40)
Child gender male	180	72 (40)
Long-gap esophageal atresia/esophageal atresia, gross type A and B^a	180	24 (13)
Associated anomalies	180	106 (59)
Cardiovascular malformation	180	48 (27)
Anorectal malformation	180	20 (11)
VACTERL association^b	180	26 (14)
Severe tracheomalacia^c	180	27 (15)
Pediatric surgical characteristics
No primary esophageal anastomosis	180	24 (13)
Gastrostomy insertion		56 (32)
Revisional surgery following repair due to anastomotic leak or recurrent fistula	180	25 (14)
Number of esophageal dilatations	178		3 (11)
Severity level of esophageal atresia
Severe esophageal atresia^d	180	95 (53)
Child psychosocial characteristics
Child receiving additional school support	161	56 (35)
Child with high school absence, ≥ 1/month	180	38 (24)
Parent-reported PedsQL^™ 4.0 total scores	180		79.2 (19.0)
Child age	180		9.3 (4.7)
Parent/family characteristics
Mother	180	159 (88)
Single parent	175	26 (15)
Parent having no college or university education	178	99 (56)
Doctor-diagnosed parental disease	177	29 (16)
Parent on sick leave the previous year	172	9 (5)
Family receiving financial carer allowance previous year	172	54 (31)
Family residence in Germany	180	56 (31)
Family resident in rural area	176	46 (26)
The PedsQL™ family impact module scale score (parent-report)
Family impact module total scale score	180		75.2 (19.4)

^aPure esophageal fistula (Gross A) or Esophageal fistula with a proximal tracheoesophageal fistula (Gross B)
^bRequires at least three anomalies of vertebral defects, anal atresia, cardiac defects, tracheoesophageal fistula, renal anomalies, and limb abnormalities
^cSevere tracheomalacia/tracheobronchomalacia, verified through flexible bronchoscopy to have an anteroposterior collapse during coughing and expiration documented as ≥ 75%, excessive and/or severe
^dAt least one of the following criteria: primary anastomosis was delayed and/or EA replacement was accomplished, presence of a severe tracheomalacia, presence of at least one other congenital health condition resulting in disability

ISSN: 1750-1172