Quality of life in children with severe forms of idiopathic nephrotic syndrome in stable remission-A cross-sectional study

Acta Paediatr. 2019 Dec;108(12):2267-2273. doi: 10.1111/apa.14912. Epub 2019 Jul 15.


Aim: Severe forms of idiopathic nephrotic syndrome (INS) require immunosuppressive therapy: oral treatment or intravenous therapy (rituximab, RTX). The main objective was to describe quality of life (QOL) in these specific patients.

Methods: Cross-sectional, multicentre, observational study analysed QOL using a standardised questionnaire in children from 7 to 17 years, with a steroid-dependent or steroid-resistant INS in stable remission. The questionnaire consisted of 30 questions concerning physical and emotional well-being, self-esteem, family, friends, school and disease resulting in a global score of 0-100.

Results: A total of 110 patients with a mean age of 11.6 years from three French paediatric nephrology centres were included. A total of 71 patients had oral immunosuppressive treatment, 27 had RTX, and 12 had both. 13.6% of patients had a steroid-resistant INS. The mean number of relapses was 5.8. Seventy-eight patients answered the questionnaire. The global score in the whole study population was 74.7; 72.6 in the RTX group, 76.2 in the oral drugs group, (P = 0.49). The results of sub-dimension 'school' were statistically lower in RTX group (61.6 ± 19.5) compared with oral drugs group (71.4 ± 16; P = 0.02).

Conclusion: Global QOL score was high in 'difficult-to-treat' patients with INS in stable remission on oral immunosuppressive or RTX treatment.

Keywords: children and adolescents; immunosuppression; nephrotic syndrome; quality of life.

Publication types

  • Multicenter Study
  • Observational Study

MeSH terms

  • Adolescent
  • Child
  • Cross-Sectional Studies
  • Female
  • Humans
  • Immunosuppressive Agents / therapeutic use*
  • Male
  • Nephrotic Syndrome / drug therapy
  • Nephrotic Syndrome / psychology*
  • Quality of Life*


  • Immunosuppressive Agents