Quality of life assessment in pediatric nephrotic syndrome in North Sumatera Province: Parent-and-child proxy report

Background: Nephrotic syndrome (NS) is a pediatric kidney disease with a high recurrence rate, impacting patient quality of life (QoL). This study aimed to assess the QoL of NS children in North Sumatera using a parent-and-child proxy report. Methods: This was a cross-sectional study (February–December 2023) in the nephrology and growth and developmental outpatient ward, Pediatrics Department, Adam Malik Hospital, and Prof. Dr. Chairuddin P. Lubis Universitas Sumatera Utara Hospital, Medan, Indonesia. The inclusion criteria for cases were children aged 5–18 who met the diagnostic criteria of NS. Cases were age-matched with healthy children as controls. The PedsQL 4.0 generic core scale instrument was used for the QoL assessment. Normally distributed continuous data were expressed as the mean and standard deviation; categorical data were expressed as proportions. Differences between the groups were analyzed using an independent t-test, and the correlation of illness duration and daily steroid dose with QoL was determined using the Pearson correlation test. Results: A total of 44 NS pediatric patients were age-matched with 44 healthy children. A significant difference in QoL existed between the school scores of the NS and healthy groups in the parent proxy report (p = 0.001) and between the school score and total score of the child proxy report (p = 0.003 and p = 0.040, respectively). A significant difference in QoL existed in emotional scores between the remission and relapse groups in the parent-and-child proxy reports (p = 0.019 and 0.030, respectively). A significant negative correlation existed between the daily steroid dose and QoL in school and the total score of the parent proxy report (p = 0.025; r = –0.338). Conclusion: The parent and child reports revealed a significant difference in QoL between the school scores of NS pediatric patients and healthy children. A significant difference in the emotional scores of NS pediatric patients in remission and relapse was also observed. The daily steroid dose was negatively correlated with the school score in the parent proxy report.