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Quality of life in children with nephrotic syndrome: a cross-sectional study using Hindi version of PedsQL 4.0 Generic Core Scales

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Abstract

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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Availability of data and materials

The datasets generated during and analyzed during the current study are available from the corresponding author on reasonable request.

Code availability

Not applicable.

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Authors and Affiliations

Authors

Contributions

All authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by RM, KA, and PKP. The first draft of the manuscript was written by RM and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Rufaida Mazahir.

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The authors have declared that no conflict of interest exists.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and national research committee at which the studies were conducted (IRB approval number-EC/08/18/1414) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from the caregivers of all individual participants included in the study.

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Written informed consent was obtained from the parents/legal guardians.

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Parents/legal guardians signed informed consent regarding publishing their data.

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Mazahir, R., Anand, K. & Pruthi, P.K. Quality of life in children with nephrotic syndrome: a cross-sectional study using Hindi version of PedsQL 4.0 Generic Core Scales. Clin Exp Nephrol 26, 552–560 (2022). https://doi.org/10.1007/s10157-022-02186-0

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