The impact of pediatric nephrotic syndrome on families
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ORIGINAL ARTICLE
The impact of pediatric nephrotic syndrome on families Sulagna Mitra & Sushmita Banerjee
Received: 16 December 2010 / Revised: 19 February 2011 / Accepted: 24 February 2011 / Published online: 29 May 2011 # IPNA 2011
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 longterm 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
S. Mitra : S. Banerjee (*) Calcutta Medical Research Institute – Pediatrics, 7/2 Diamond Harbour Road, Calcutta, Kolkata 700027, India e-mail: [email protected] S. Banerjee Institute of Child Health - Pediatric Nephrology, Kolkata, India
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. Keywords Caregiver stress . Economic disease burden . Becks Depression Inventory . Kuppuswamy scale . Psychosocial effects
Introduction Nephrotic syndrome (NS) is one of the most common pediatric renal diseases in India. The majority (80–90%) of patients have steroid-sensitive disease, with a very high probability of final cure [1, 2]. However, the disease often runs a prolonged and recurring course, affecting young children during the phase in their lives when they are growing physically as well as socially and intellectually [3]. It is recognized to cause short- and long-term physical and psychosocial morbidities, particularly in those severely affected with frequent relapses, steroid dependence, or steroid resistance [4, 5]. The condition is treated with steroids and other immunosuppressives, which also have detrimental effects on physical and psychological wellbeing [2, 6]. As this condition usually affects very young children, the immediate burden of the disease
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