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Article Dans Une Revue Journal of Nephrology Année : 2021

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

1 CHU Henri Mondor [Créteil]
2 IMRB - Institut Mondor de Recherche Biomédicale
3 CIC 1426 - Centre d'Investigation Clinique 1426
4 ECEVE (U1123 / UMR_S_1123) - Epidémiologie Clinique et Evaluation Economique Appliquées aux Populations Vulnérables
5 Département de Néphrologie [CHU Necker]
6 AP-HP - Hôpital Bichat - Claude Bernard [Paris]
7 CRI (UMR_S_1149 / ERL_8252 / U1149) - Centre de recherche sur l'Inflammation
8 AP-HP Hôpital universitaire Robert-Debré [Paris]
9 CHU Nantes - Centre Hospitalier Universitaire de Nantes = Nantes University Hospital
10 CHU Bordeaux
11 CHRU Lille - Centre Hospitalier Régional Universitaire [CHU Lille]
12 CHU Toulouse - Centre Hospitalier Universitaire de Toulouse
13 C2VN - Centre recherche en CardioVasculaire et Nutrition = Center for CardioVascular and Nutrition research
14 LA CONCEPTION - Hôpital de la Conception [CHU - APHM]
15 CHU Tenon [AP-HP]
16 HEGP - Hôpital Européen Georges Pompidou [APHP]
17 Service de Néphrologie [Rouen]
18 CHU Nice - Centre Hospitalier Universitaire de Nice
19 Hôpital Ambroise Paré [AP-HP]
20 CESP - Centre de recherche en épidémiologie et santé des populations
21 CHU Pitié-Salpêtrière [AP-HP]
22 Centre Hospitalier Universitaire de Rennes [CHU Rennes] = Rennes University Hospital [Ponchaillou]
23 CHUGA - Centre Hospitalier Universitaire [CHU Grenoble]
24 Centre Hospitalier de La Rochelle (CHR)
25 CHRU Montpellier - Centre Hospitalier Régional Universitaire [Montpellier]
26 Cellules Souches, Plasticité Cellulaire, Médecine Régénératrice et Immunothérapies (IRMB)
27 CHU Reims - Hôpital universitaire Robert Debré [Reims]
28 Hôpital Necker - Enfants Malades [AP-HP]
Claire Rigothier
  • Fonction : Auteur
Alexandre Hertig
Karine Dahan
  • Fonction : Auteur
Antoine Durrbach
Olivia Boyer

Résumé

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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Dates et versions

hal-03648461 , version 1 (21-04-2022)

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Marie-Sophie Meuleman, Sophie Guilmin-Crépon, Aurélie Hummel, Eric Daugas, Agnès Dumas, et al.. Long-term health-related quality of life outcomes of adults with pediatric onset of frequently relapsing or steroid-dependent nephrotic syndrome. Journal of Nephrology, 2021, 35 (4), pp.1123-1134. ⟨10.1007/s40620-021-01111-0⟩. ⟨hal-03648461⟩
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