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. 2022 May;35(4):1123-1134.
doi: 10.1007/s40620-021-01111-0. Epub 2021 Jul 5.

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

Marie-Sophie Meuleman  1   2 , Sophie Guilmin-Crépon  3   4 , Aurélie Hummel  5 , Eric Daugas  6 , Agnès Dumas  3 , Fallou Leye  4 , Jacques Dantal  7 , Claire Rigothier  8 , François Provot  9 , Dominique Chauveau  10 , Stéphane Burtey  11 , Alexandre Hertig  12 , Karine Dahan  13 , Antoine Durrbach  14 , Claire Dossier  15 , Alexandre Karras  16 , Dominique Guerrot  17 , Vincent Esnault  18 , Philippe Rémy  14   19 , Ziad A Massy  20   21 , Isabelle Tostivint  22 , Marie-Pascale Morin  23 , Philippe Zaoui  24 , Olivier Fritz  25 , Moglie Le Quintrec  26 , Alain Wynckel  27 , Aurélie Bourmaud  3   4 , Olivia Boyer  28 , Dil Sahali  14   19 , Corinne Alberti  3   4 , Vincent Audard #  14   19 , Hélène Mellerio #  3   29   30
Affiliations

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

Marie-Sophie Meuleman et al. J Nephrol. 2022 May.

Abstract

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.

Keywords: Education; Family life; Idiopathic nephrotic syndrome; Long-term outcomes; Quality of life; Socioprofessional status.

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