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Multidimensional impact on families of children with steroid-sensitive nephrotic syndrome
Gurdeep S Dhooria1, Harmeet P Singh2, Deepak Bhat1
1Department of Pediatrics, Dayanand Medical College and Hospital, Ludhiana, India.
Insights
Children with nephrotic syndrome (NS) experience significant family impact, particularly in worry and emotional function domains. Early evaluation of family functioning is crucial for supporting these families.
Area of Science:
- Pediatric Nephrology
- Quality of Life Research
- Family Medicine
Background:
- Nephrotic syndrome (NS) in children presents a prolonged, relapsing course necessitating frequent medical interventions and long-term steroid use.
- These treatment demands and chronic illness concerns profoundly affect multiple aspects of a child's and their family's functioning.
- Understanding the comprehensive impact on families is essential for holistic patient care.
Purpose of the Study:
- To assess the multidimensional impact of nephrotic syndrome on families using the PedsQL Family Impact Module (FIM).
- To quantify the effects of childhood nephrotic syndrome on caregiver quality of life and family dynamics.
- To identify specific domains of family functioning most affected by pediatric NS.
Main Methods:
- A cross-sectional study involving 50 children with steroid-sensitive nephrotic syndrome (SSNS) and 50 age- and sex-matched healthy controls.
- Data collection included baseline demographics, socioeconomic status, and clinical variables for SSNS cases.
- The PedsQL Family Impact Module (FIM), a parent-reported tool, was administered to measure family impact and caregiver HRQOL.
Main Results:
- Families of children with NS reported significantly lower overall FIM scores (mean 60.76 ± 15.66) compared to controls (mean 100).
- The most significantly affected domains were 'worry' (mean 46.20 ± 20.66) and 'emotional function' (mean 46.80 ± 24.61).
- Other domains of family functioning were also demonstrably impacted in families of children with NS.
Conclusions:
- The findings underscore a substantial negative impact on family functioning and caregiver quality of life in pediatric nephrotic syndrome.
- Routine evaluation of the family impact score is recommended for all children diagnosed with NS.
- Interventions should address the identified domains of 'worry' and 'emotional function' to support affected families.
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.
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