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Health Related Quality of Life in Children with Nephrotic Syndrome in Bangladesh
1Dr Mowshumi Rahman, Medical officer, National Institute of Diseases of the Chest Diseases & Hospital, Dhaka, Bangladesh.
Insights
Health-related quality of life is impaired in children with nephrotic syndrome, particularly in physical and social aspects. Frequent relapses significantly impact quality of life, highlighting the need for better management strategies.
Area of Science:
- Pediatric Nephrology
- Quality of Life Research
- Chronic Childhood Illness
Background:
- Nephrotic syndrome outcomes have improved, but health-related quality of life (QoL) data in children remains limited.
- Understanding QoL is crucial for comprehensive care in pediatric nephrotic syndrome.
- Previous research has not sufficiently addressed QoL in this specific pediatric population.
Purpose of the Study:
- To assess the health-related quality of life in children diagnosed with nephrotic syndrome.
- To identify factors associated with impaired QoL in pediatric nephrotic syndrome patients.
- To provide data for improving supportive care and management strategies.
Main Methods:
- A cross-sectional study conducted over six months at a tertiary care hospital in Bangladesh.
- Inclusion criteria: 50 children (2-12 years) with nephrotic syndrome and ≥3 relapses, diagnosed ≥1 year prior.
- Quality of Life was measured using the Bengali-translated Pediatric Quality of Life Inventory™ (PedsQL™) and a nephrotic syndrome-specific questionnaire, with data collected via interviews.
Main Results:
- Children with nephrotic syndrome experienced significantly impaired physical and social QoL scores.
- Frequent relapses (≥3) were strongly associated with lower kidney disease-specific QoL scores (p=0.04).
- Older child age and longer time since diagnosis correlated with poorer physical and social QoL scores (p<0.001).
Conclusions:
- Physical and social functioning are the most affected domains of QoL in children with nephrotic syndrome.
- Frequent disease relapses are a significant determinant of impaired health-related quality of life.
- Prolonged disease activity in nephrotic syndrome is linked to substantial QoL deficits, necessitating targeted interventions.
Abstract:
Outcome of children with nephrotic syndrome has continued to improve over time. However minimal data exist to describe health-related quality of life in children with nephrotic syndrome. This cross sectional study was conducted over a period of six months to assess the health related quality of life in children with nephrotic syndrome in the Department of Pediatric Nephrology, Dhaka Medical College Hospital, Bangladesh. Fifty children (age ranged 2-12 years) with nephrotic syndrome who had three or more relapses diagnosed at least one year back receiving treatment and on follow up were included in this study. Quality of Life scores were collected using Bengali translated instruments- the Pediatric Quality of Life Inventory™ (PedsQL™) version 4.0 Generic Scale and the Pediatric Quality of Life Questionnaire for Nephrotic Syndrome proxy-report from parents. Medical data and Demographic data were collected from medical records, and from parents in outpatient department or hospital ward. Interviews of eligible guardians were performed individually to collect quality of life (QoL) scores. Among 50 children, mean±SD age of the children was 7±2.92 years. Most children were male (58%). Female parents respondent during interview were 62%, most parents (48%) were very poor in socioeconomic condition. Most children had frequent relapses (60%). Median time since diagnosis was 2 years. Regarding PedsQL scores, child age with physical summary score (p value <0.001), child age with social summary score (p value 0.003), frequent relapse with kidney disease summary score (p value 0.04) and time since diagnosis (p value <0.001) were statistically significant. In conclusion physical and social summary score were worst. Frequent relapse found to be an important factor in impaired QoL. Prolonged duration of the disease activity was associated with significant impairment of QoL.
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