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Quality of life in children with severe forms of idiopathic nephrotic syndrome in stable remission—A cross‐sectional study
Author(s) -
Roussel Aphaia,
Delbet JeanDaniel,
Micheland Laurianne,
Deschênes Georges,
Decramer Stephane,
Ulinski Tim
Publication year - 2019
Publication title -
acta paediatrica
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.772
H-Index - 115
eISSN - 1651-2227
pISSN - 0803-5253
DOI - 10.1111/apa.14912
Subject(s) - medicine , nephrotic syndrome , quality of life (healthcare) , observational study , rituximab , cross sectional study , nephrology , population , pediatrics , nursing , environmental health , pathology , lymphoma
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.