Richard U Garcia1, Sanjeev Aggarwal2, Girija Natarajan3. 1. 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. 2. Division of Cardiology, Carman and Ann Adams Department of Pediatrics, Children's Hospital of Michigan, Wayne State University School of Medicine, Detroit, Michigan, USA. 3. Division of Neonatology, Carman and Ann Adams Department of Pediatrics, Children's Hospital of Michigan, Wayne State University School of Medicine, Detroit, MI, USA.
Abstract
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 <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. 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.
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 <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. 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.