Multidimensional impact on families of children with steroid-sensitive nephrotic syndrome

Aim: Children with nephrotic syndrome (NS) have prolonged disease course with relapses requiring frequent visits and prolonged steroid therapy with their long-term concerns. All these factors affect the child and their families in many domains of functioning. The objective of this study was to assess multidimensional impact on families of children with nephrotic syndrome using (PedsQL) Family Impact Module (FIM).

Methods: This cross-sectional study was conducted in a paediatric nephrology clinic of a tertiary care hospital. Fifty cases of steroid-sensitive nephrotic syndrome between age group of 2-18 years were included, and equal age-sex matched healthy children were taken as controls. Baseline demographic factors including age, gender and education status, modified Kuppuswamy's socio-economic status were collected and clinical variables of NS cases were recorded. FIM is a parent-reported instrument that measures the impact of paediatric chronic health conditions on care giver's HRQOL and their family function. Mean FIM scores were compared among the cases and controls, and different predictive factors affecting family impact (FI) were analysed.

Results: The FI total score showed significantly lower scores in cases (mean score: 60.76 ± 15.66) as compared to controls (mean 100). Among the individual groups, lowest scores were found in two domains, namely 'worry' and 'emotional function' with mean scores of 46.20 ± 20.66 and 46.80 ± 24.61, respectively, although other domains were also significantly affected.

Conclusion: FI score should be evaluated in all cases of NS as parenting such children may significantly affect all domains of family functioning.