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

•Impaired functional status associated to higher Risk-Adjusted Congenital Heart Surgery category of congenital heart disease.•Functional status correlates strongly with total and financial impact on the family.•Parental report of functional status has potential in developmental surveillance of children with congenital heart diseases.

AimsTo 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.MethodsIn 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.ResultsOur 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.ConclusionsMore 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.