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

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

Child clinical and psychosocial characteristics nreplies 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 Ba 180 24 (13)  
 Associated anomalies 180 106 (59)  
 Cardiovascular malformation 180 48 (27)  
 Anorectal malformation 180 20 (11)  
 VACTERL associationb 180 26 (14)  
 Severe tracheomalaciac 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 atresiad 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)
  1. aPure esophageal fistula (Gross A) or Esophageal fistula with a proximal tracheoesophageal fistula (Gross B)
  2. bRequires at least three anomalies of vertebral defects, anal atresia, cardiac defects, tracheoesophageal fistula, renal anomalies, and limb abnormalities
  3. cSevere tracheomalacia/tracheobronchomalacia, verified through flexible bronchoscopy to have an anteroposterior collapse during coughing and expiration documented as ≥ 75%, excessive and/or severe
  4. 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