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The impact of pediatric nephrotic syndrome on families
Sulagna Mitra1, Sushmita Banerjee
1Calcutta Medical Research Institute - Pediatrics, 7/2 Diamond Harbour Road, Calcutta, Kolkata 700027, India.
Insights
Pediatric nephrotic syndrome (NS) causes significant mental and economic distress for caregivers, with nearly half experiencing moderate to severe depression and facing substantial financial burdens. Support systems are crucial for families managing this condition.
Area of Science:
- Pediatric Nephrology
- Psychology
- Health Economics
Background:
- Pediatric nephrotic syndrome (NS) is a significant kidney disorder in children.
- While often having a good long-term prognosis, NS can impose considerable burdens on families.
Purpose of the Study:
- To evaluate the psychological and economic impact of pediatric nephrotic syndrome on family caregivers.
- To compare these effects with those experienced by families of children with minor illnesses.
Main Methods:
- A comparative study involving 50 caregivers of children with NS and 50 control caregivers.
- Utilized Beck's Depression Inventory (BDI) for psychological assessment and the modified Kuppuswamy scale for socioeconomic status.
- Disease expenditure was quantified through parent interviews, with statistical analysis using ANOVA and Duncan's multiple range test.
Main Results:
- 48% of NS caregivers reported moderate to severe depression versus 12% of controls.
- NS caregivers exhibited significantly higher mean BDI scores, correlated with disease severity and lower socioeconomic status.
- Families with NS patients incurred substantially higher medical expenditures (30-60% of monthly income) compared to controls (6.9%), with 10% facing debt or depleting savings.
Conclusions:
- Pediatric NS imposes significant psychological distress and economic hardship on caregivers.
- Severe NS cases warrant classification as chronic illnesses, potentially qualifying for disability benefits and financial aid.
- Implementing support groups and local supportive care is recommended to alleviate family burdens.
Abstract:
The objective of our study was to assess the psychologic and economic effects of pediatric nephrotic syndrome (NS) on caregivers. Caregivers of 50 children with NS were compared with a control group of 50 families of children with minor illnesses attending the same outpatient facility. Beck's Depression Inventory (BDI) IA was used to assess the mental status of the primary caregiver. The socioeconomic status of the family was assessed using the modified Kuppuswamy scale. Expenditure for the illness was calculated during parent interviews. The difference between groups was analyzed using analysis of variance (ANOVA) and Duncan's multiple range test. BDI scores signified moderate to severe depression in 48% of NS caregivers compared with 12% controls. The mean BDI score was significantly higher in NS caregivers, correlating positively with disease severity and negatively with socioeconomic status. Expenditure for disease also was significantly higher in families with NS patients, varying between 30% and 60% of monthly income depending on disease severity compared with 6.9% in controls. In 10% of NS families, it was more than total income, forcing families to break into savings or go into debt. Although pediatric NS most commonly has an excellent long-term outcome, it causes significant mental and economic stress on families. Severe forms should be categorized as a chronic illness and be eligible for disability benefits and subsidized travel and medical care. Establishing support groups and supportive care at local levels would help reduce the burden on families of patients wtih NS.
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