Parental perception of functional status and impact on the family of children with congenital heart surgery

Aims: 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. Methods: 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 <. 32 weeks 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. Results: 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. Conclusions: 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.