Long-term health-related quality of life outcomes of adults with pediatric onset of frequently relapsing or steroid-dependent nephrotic syndrome

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Meuleman, Marie-Sophie | Guilmin-Crépon, Sophie | Hummel, Aurélie | Daugas, Eric | Dumas, Agnès | Leye, Fallou | Dantal, Jacques | Rigothier, Claire | Provot, François | Chauveau, Dominique | Burtey, Stéphane | Hertig, Alexandre | Dahan, Karine | Durrbach, Antoine | Dossier, Claire | Karras, Alexandre | Guerrot, Dominique | Esnault, Vincent | Rémy, Philippe | Massy, Ziad | Tostivint, Isabelle | Morin, Marie-Pascale | Zaoui, Philippe | Fritz, Olivier | Le Quintrec, Moglie | Wynckel, Alain | Bourmaud, Aurélie | Boyer, Olivia | Sahali, Dil | Alberti, Corinne | Audard, Vincent | Mellerio, Hélène

Edité par CCSD ; Italian Society of Nephrology/Springer -

International audience. Background: Long-term psychosocial outcomes and health-related quality of life (HRQOL) in adults with pediatric onset of frequently relapsing or steroid-dependent idiopathic nephrotic syndrome (FRNS or SDNS) remain to be determined.Methods: In this prospective cohort study, 59 adults with pediatric onset of FRNS/SDNS and persistent active glomerular disease in adulthood completed the GEDEPAC-2 questionnaire exploring 11 well-being domains. Data were compared to the French general population (FGP) with standardized incidence ratio ([SIR]; adjusted for period, age, gender). Regression models were performed to identify predictive factors of psychosocial well-being.Results: In 82% of cases, the questionnaire was completed while the participants (n = 59; 47 men; median age = 32 years; median number of relapses = 13) were in complete remission (under specific therapy in 76% of cases). Participants had higher educational degree than in the FGP (SIR = 6.3; p < 0.01) and more frequently a managerial occupation (SIR = 3.1; p < 0.01). Social integration was acceptable with regard to marital status and experience of sexual intercourse, but experiences of discrimination were far more frequent (SIR = 12.5; p < 0.01). The SF-12 mental component summary (MCS) score was altered (Z-score = - 0.6; p < 0.01) and mean multidimensional fatigue inventory (MFI-20) global fatigue score appeared high (12). Transfer from pediatric to adult healthcare was followed by a period of discontinued care for 33% of participants. Multivariate analysis revealed a close relationship between MFI-20, physical health, and MCS.Conclusions: This study shows that pediatric onset FRNS and SDNS may have a long-term negative impact on mental HRQOL and highlights the impact of fatigue, which is often not adequately considered in routine care.

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