ESPN 54th Annual Meeting

ESPN 2022


 
Health-related quality of life and psychosocial adjustment of patients with recently diagnosed idiopathic nephrotic syndrome
FLOOR VELTKAMP 1 Lorynn Teela 2 HEDY A. VAN OERS 2 ELSKE M. MAK-NIENHUIS 1 LOTTE HAVERMAN 2 ANTONIA H.M. BOUTS 1

1- AMSTERDAM UNIVERSITY MEDICAL CENTERS, UNIVERSITY OF AMSTERDAM, EMMA CHILDRENS HOSPITAL, DEPARTMENT OF PEDIATRIC NEPHROLOGY
2- AMSTERDAM UNIVERSITY MEDICAL CENTERS, UNIVERSITY OF AMSTERDAM, EMMA CHILDRENS HOSPITAL, DEPARTMENT OF CHILD AND ADOLESCENT PSYCHIATRY AND PSYCHOSOCIAL CARE
 
Introduction:

Idiopathic nephrotic syndrome (INS) in children with relapsing disease is associated with lower health-related quality of life (HRQoL) and psychosocial functioning. However, little is known about HRQoL and psychosocial functioning in children with recently diagnosed steroid-sensitive nephrotic syndrome (SSNS). The aim of this study was to assess these outcomes and related variables in children with new onset SSNS.

Material and methods:

Dutch and Belgian children (n=46) aged 2-16 years with first onset SSNS participated in a randomised placebo-controlled trial (LEARNS) between April 2018 and December 2020. To measure HRQoL and psychosocial functioning, children (age ≥8 years, self-report) and/or their parents (proxy-report) completed two online generic patient-reported outcome measures (PROMs) at 4 weeks after first onset: the Pediatric Quality of Life Inventory 4.0 and the Strengths and Difficulties Questionnaire. Total and subscale scores and the proportion of children with impaired HRQoL (<1 SD) or clinical scores for strengths and difficulties (<10th and >90th percentile, respectively) were compared to the Dutch norm population. Multivariate regression analyses were used to asses related variables of HRQoL. 

Results:

Forty patients (87%) completed the PROMs. Older children (8-18 years) reported significantly lower HRQoL on the total scale and  the physical and emotional functioning subscales compared to the reference group. A high proportion (>45%) of these children reported impaired HRQoL scores. No differences in HRQoL between children aged 2-4 or 5-7 years and the reference group was found, except for higher scores on social functioning (5-7 years). A small proportion of children scored within the clinical range on psychosocial functioning. No variables related to HRQoL or psychosocial functioning could be identified. 

Conclusions:

In children with new onset SSNS receiving high doses of steroids, HRQoL and psychosocial functioning was moderately affected, which was more profound in older children. Longitudinal data could provide important insight in the evolution and predictors of HRQoL in SSNS.