TY - JOUR
T1 - Health-related quality of life of children with first onset steroid-sensitive nephrotic syndrome
AU - Veltkamp, Floor
AU - Teela, Lorynn
AU - Luijten, Michiel A. J.
AU - van Oers, Hedy A.
AU - Mak-Nienhuis, Elske M.
AU - Haverman, Lotte
AU - Bouts, Antonia H. M.
AU - on behalf of the LEARNS consortium
AU - Adeel, Abdul
AU - Bael, Anna
AU - Bouts, Antonia H. M.
AU - Buter, Nynke H.
AU - van der Deure, Hans
AU - Dorresteijn, Eiske
AU - Florquin, Sandrine
AU - Gracchi, Valentina
AU - Horuz, Flore
AU - Kloosterman-Eijgenraam, Francis
AU - Levtchenko, Elena
AU - Mak-Nienhuis, Elske M.
AU - Mathôt, Ron A. A.
AU - Oversteege, Floor
AU - de Pont, Saskia
AU - van Rooij-Kouwenhoven, Roos W. G.
AU - Schreuder, Michiel F.
AU - Schriemer, Rixt
AU - Vos, Paul
AU - Walle, Johan Vande
AU - van Wijk, Joanna A. E.
N1 - Funding Information: The authors like to thank all local investigators from the participating hospitals involved in the LEARNS study. The LEARNS study is an interuniversity collaboration in the Netherlands that is established to perform a double blind, placebo-controlled randomised clinical trial on the efficacy of levamisole on relapses in children with a first episode of steroid-sensitive nephrotic syndrome, and study basic mechanisms underlying the nephrotic syndrome and the mode of action of levamisole. Principal investigators are (in alphabetical order): A.H.M. Bouts (Department of Pediatric Nephrology, Amsterdam UMC, location AMC, Amsterdam, the Netherlands), S. Florquin (Department of Pathology, Amsterdam UMC, location AMC, Amsterdam, the Netherlands), J.E. Guikema (Amsterdam UMC, location AMC, Amsterdam, the Netherlands), L. Haverman (Psychosocial Department, Amsterdam UMC, location AMC, Amsterdam, the Netherlands), L.P.W.J. van den Heuvel (Radboud Institute for Molecular Sciences, Radboud University Medical Center, Nijmegen, the Netherlands), E. Levtchenko (Department of Pediatric Nephrology, University Hospitals Leuven, Leuven, Belgium), R.A.A. Mathôt (Department of Hospital Pharmacy and Clinical Pharmacology, Amsterdam UMC, location AMC, Amsterdam, the Netherlands), M.F. Schreuder (Department of Pediatric Nephrology, Radboud University Medical Center, Nijmegen, the Netherlands), B. Smeets (Radboud Institute for Molecular Sciences, Radboud University Medical Center, Nijmegen, the Netherlands), and J.A.E. van Wijk (Department of Pediatric Nephrology, Amsterdam UMC, location AMC, Amsterdam, the Netherlands). Funding Information: The LEARNS study is funded by a consortium grant from the Dutch Kidney Foundation (CP16.03). Additional financial support was granted by Innovatiefonds Zorgverzekeraars and the Dr. C.J. Vaillant Fund. Publisher Copyright: © 2023, The Author(s).
PY - 2023/10
Y1 - 2023/10
N2 - This study assessed HRQoL and emotional and behavioral difficulties (EBD) and associated variables in children with first onset SSNS. While relapsing steroid-sensitive nephrotic syndrome (SSNS) in children is associated with lower health-related quality of life (HRQoL), little is known about first onset. Four weeks after onset, children (2–16 years) and/or their parents who participated in a randomized placebo-controlled trial, completed the Pediatric Quality of Life Inventory 4.0 (PedsQL) and Strengths and Difficulties Questionnaire (SDQ) to measure HRQoL and EBD, respectively. Total and subscale scores and the proportion of children with impaired HRQoL (> 1 SD below the mean of the reference group) or SDQ clinical scores (< 10th and > 90th percentile) were compared to the Dutch general population (reference group). Regression analyses were used to identify associated variables. Compared to the reference group, children 8–18 years reported significantly lower total HRQoL, and physical and emotional functioning. A large proportion (> 45%) of these children had impaired HRQoL. There were no differences in HRQoL between children 2–7 years and the reference group, except for higher scores on social functioning (5–7 years). Similar proportions of SSNS and reference children scored within the clinical range of SDQ subscales. Age, sex, and steroid side-effects were negatively associated with HRQol and/or EBD. Conclusion: This study showed that HRQoL and EBD are affected in children of different ages with first onset SSNS. This calls for more awareness from healthcare providers and routinely monitoring of HRQoL and EBD in daily clinical care to prevent worsening of symptoms. Clinical trial registry: Netherlands Trial Register (https://trialsearch.who.int/ ; NTR7013), date of registration: 02 June 2018. What is Known: • Health-related quality of life (HRQoL) is lower and emotional and behavioral difficulties (EBD) is more affected in children with frequently-relapsing and steroid-dependent nephrotic syndrome. What is New: • HRQoL and EBD are affected in children with first onset steroid-sensitive nephrotic syndrome compared to a reference group of the Dutch general population. • To what extent HRQoL and EBD are affected depends on the age of the patient.
AB - This study assessed HRQoL and emotional and behavioral difficulties (EBD) and associated variables in children with first onset SSNS. While relapsing steroid-sensitive nephrotic syndrome (SSNS) in children is associated with lower health-related quality of life (HRQoL), little is known about first onset. Four weeks after onset, children (2–16 years) and/or their parents who participated in a randomized placebo-controlled trial, completed the Pediatric Quality of Life Inventory 4.0 (PedsQL) and Strengths and Difficulties Questionnaire (SDQ) to measure HRQoL and EBD, respectively. Total and subscale scores and the proportion of children with impaired HRQoL (> 1 SD below the mean of the reference group) or SDQ clinical scores (< 10th and > 90th percentile) were compared to the Dutch general population (reference group). Regression analyses were used to identify associated variables. Compared to the reference group, children 8–18 years reported significantly lower total HRQoL, and physical and emotional functioning. A large proportion (> 45%) of these children had impaired HRQoL. There were no differences in HRQoL between children 2–7 years and the reference group, except for higher scores on social functioning (5–7 years). Similar proportions of SSNS and reference children scored within the clinical range of SDQ subscales. Age, sex, and steroid side-effects were negatively associated with HRQol and/or EBD. Conclusion: This study showed that HRQoL and EBD are affected in children of different ages with first onset SSNS. This calls for more awareness from healthcare providers and routinely monitoring of HRQoL and EBD in daily clinical care to prevent worsening of symptoms. Clinical trial registry: Netherlands Trial Register (https://trialsearch.who.int/ ; NTR7013), date of registration: 02 June 2018. What is Known: • Health-related quality of life (HRQoL) is lower and emotional and behavioral difficulties (EBD) is more affected in children with frequently-relapsing and steroid-dependent nephrotic syndrome. What is New: • HRQoL and EBD are affected in children with first onset steroid-sensitive nephrotic syndrome compared to a reference group of the Dutch general population. • To what extent HRQoL and EBD are affected depends on the age of the patient.
KW - Nephrotic syndrome
KW - Pediatric
KW - Psychosocial functioning
KW - Quality of life
UR - http://www.scopus.com/inward/record.url?scp=85167356530&partnerID=8YFLogxK
U2 - https://doi.org/10.1007/s00431-023-05135-5
DO - https://doi.org/10.1007/s00431-023-05135-5
M3 - Article
C2 - 37548700
SN - 0340-6199
VL - 182
SP - 4605
EP - 4614
JO - European journal of pediatrics
JF - European journal of pediatrics
IS - 10
ER -