Quality of life in children with nephrotic syndrome: a cross-sectional study using Hindi version of PedsQL 4.0
Rufaida Mazahir1, Kanav Anand2, P K Pruthi2
1Division of Pediatric Nephrology, Department of Pediatrics, Institute of Child Health, Sir Ganga Ram Hospital, New Delhi, India. rufaidamazahir@gmail.com.
Insights
Children with idiopathic nephrotic syndrome (INS) experience significantly lower quality of life (QOL) across physical, social, and school domains compared to healthy peers. Steroid-resistant NS and higher immunosuppressant use predict poorer QOL outcomes.
Area of Science:
- Pediatric Nephrology
- Quality of Life Research
- Glomerular Diseases
Background:
- Idiopathic nephrotic syndrome (INS) is the most prevalent glomerular disorder in children globally.
- Limited research exists on the quality of life (QOL) for children with INS, particularly in developing nations.
- This study addresses the gap by comparing QOL in Indian children with INS to healthy controls.
Purpose of the Study:
- To compare the QOL of children diagnosed with idiopathic nephrotic syndrome (INS) against a matched cohort of healthy children.
- To investigate the impact of different INS subtypes on specific QOL domains.
- To identify predictors of impaired QOL in pediatric INS patients.
Main Methods:
- A single-center, cross-sectional study involving 102 children (2-18 years) with primary INS and 102 matched healthy controls in India.
- Quality of Life (QOL) data collected using the PedsQL™4.0 Generic Core Scales (child and parent reports).
- Statistical analysis to compare QOL scores between cases and controls and identify influencing factors.
Main Results:
- Children with INS demonstrated significantly lower overall PedsQL scores compared to healthy controls (p=0.0004).
- Impaired QOL was observed in physical, social, and school functioning domains (p<0.0001 for physical and school). Emotional functioning showed no significant difference.
- School functioning was the most affected domain across all INS types. Steroid-resistant NS resulted in the worst scores. Older age, relapses, prevalent NS, steroid resistance, and immunosuppressant use predicted poor QOL.
Conclusions:
- Pediatric idiopathic nephrotic syndrome (INS) significantly impacts children's quality of life (QOL) across multiple domains.
- Both child and parent perspectives highlight the detrimental effects of NS on daily functioning.
- Identifying predictors like steroid resistance and immunosuppressant use is crucial for targeted interventions to improve QOL.
Background:
Worldwide, idiopathic nephrotic syndrome (INS) is the most common glomerular disorder in children. Limited studies are available on quality of life (QOL) in children with NS, especially from developing countries. The aim of the current study was to compare the QOL of children having INS with that of matched healthy controls and to evaluate the effects of sub-types on domain scores.
Methods:
This single-center, cross-sectional analytical study was conducted in children between 2 and 18 years with primary INS, at a tertiary care center in India, from September 2018 to November 2018. QOL data were collected using PedsQL™4.0 Generic Core Scales "Hindi-for-India" version (child self-report and parent-report). A total of 102 cases with equal number of matched healthy controls were included.
Results:
The mean total PedsQL scores were lower in NS children compared to healthy controls (p-0.0004). They had statistically lower scores in physical (p- < 0.0001), social (p-0.026), and school domains (p- < 0.0001); however, no such difference was noted in emotional functioning. School functioning was the most impacted domain overall, and also across all the clinical types. Worst scores were seen in children with steroid-resistant NS in all domains. Older age-at-enrolment, higher number of relapses, prevalent NS, steroid-resistant disease, calcineurin inhibitor (CNI) use, and higher number of immunosuppressant use were important predictors of poor total QOL scores. On multivariable regression, higher number of immunosuppressant use (p-0.015) and older age-at-enrolment (p-0.016) were main predictors of impaired total scores. Cases with edema and current/previous CNI use were more likely to have impaired emotional (p-0.028) and social (p-0.040) domain sub-scores, respectively.
Conclusion:
NS has a significant impact on the QOL of children in different domains of functioning, based on their as well as parents' perspective.
Trial Registration No:
EC/08/18/1414; Date: 30/08/2018.
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