title: Parental perception of functional status and impact on the family of children with congenital heart surgery.
abstract: To assess the functional status and the family impact of children with congenital heart defects (CHD), using the parental Functional Status II (FS-II) and the Impact on Family (IOF) questionnaires.
  
  
  
  In this prospective observational study, parents of children who underwent surgery for CHD during the first year of life completed the FS-II and the IOF questionnaires. Genetic syndromes and prematurity <32weeks were exclusion criteria. The FS-II generates a total score and age specific general health (GH), activity (A) and, responsiveness (R) subscales. The IOF generates a total scale and financial and sibling subscales.
  
  
  
  Our cohort (n=100), comprised 54% males; the median (IQR) age was 32 (10-56) months. Eighteen children had age-specific scores in the 1-2 SD below mean range (n=17) or more than 2 SD below the mean (n=1) for "ill children". There were significant negative correlations between the total FS-II and total IOF (r=-0.35, p<0.001) and financial IOF (r=-0.35, p<0.001). RACHS-1 category of CHD 4-6 was associated with higher likelihood of lower functional status.
  
  
  
  More complex CHD was associated with lower functional status, which correlated with a greater impact on the families. Parental questionnaires may be useful instruments for developmental surveillance in this population.
authors.affiliation: Division of Cardiology, Carman and Ann Adams Department of Pediatrics, Children's Hospital of Michigan, Wayne State University School of Medicine, Detroit, Michigan, USA. Electronic address: rgarcias@dmc.org.
authors.forename: Richard U
authors.initials: RU
authors.lastname: Garcia
authors.affiliation: Division of Cardiology, Carman and Ann Adams Department of Pediatrics, Children's Hospital of Michigan, Wayne State University School of Medicine, Detroit, Michigan, USA.
authors.forename: Sanjeev
authors.initials: S
authors.lastname: Aggarwal
authors.affiliation: Division of Neonatology, Carman and Ann Adams Department of Pediatrics, Children's Hospital of Michigan, Wayne State University School of Medicine, Detroit, MI, USA.
authors.forename: Girija
authors.initials: G
authors.lastname: Natarajan
mesh_terms: D000328:Adult; D001294:Attitude to Health; D013504:Cardiovascular Surgical Procedures / Q000523:psychology*; D002675:Child, Preschool; D005260:Female; D006330:Heart Defects, Congenital / Q000523:psychology* / Q000534:rehabilitation / Q000601:surgery; D006801:Humans; D007223:Infant; D008297:Male; D010290:Parents / Q000523:psychology*
keywords: Congenital heart disease; Family impact; Functional status; Neurodevelopmental outcomes; Parental assessment