TY - JOUR
T1 - Distress in parents of children with first-onset steroid-sensitive nephrotic syndrome
AU - Veltkamp, Floor
AU - van Oers, Hedy A.
AU - on behalf of the LEARNS consortium
AU - Teela, Lorynn
AU - Mak-Nienhuis, Elske
AU - Haverman, Lotte
AU - Bouts, Antonia H.M.
AU - Bael, Anna
AU - Buter, Nynke
AU - van der Deure, Hans
AU - Dorresteijn, Eiske
AU - Florquin, Sandrine
AU - Gracchi, Valentina
AU - Engels, Flore
AU - Kloosterman-Eijgenraam, Francis
AU - Levtchenko, Elena
AU - Mak-Nienhuis, Elske
AU - Mathôt, Ron
AU - Oversteege, Floor
AU - de Pont, Saskia
AU - van Rooij-Kouwenhoven, Roos
AU - Schreuder, Michiel
AU - Schriemer, Rixt
AU - Vos, Paul
AU - Walle, Johan Vande
AU - van Wijk, Joanna
N1 - Funding Information:
The LEARNS study is funded by a consortium grant from the Dutch Kidney Foundation (CP16.03). Additional financial support was granted by Innvatiefonds Zorgverzekeraars and the Dr. C.J. Vaillant Fund.
Publisher Copyright:
© 2023, The Author(s).
PY - 2023/12
Y1 - 2023/12
N2 - Background:Steroid-sensitive nephrotic syndrome (SSNS) is associated with a relapsing–remitting course that can be stressful for parents. As little is known of parental distress at the first onset of SSNS, this study aims to describe parental distress and everyday problems in mothers and fathers of a child with newly diagnosed SSNS participating in a randomized controlled trial of levamisole added to corticosteroids. 'Methods: To assess distress, the Distress Thermometer for Parents (DT-P) was used, which includes questions on distress (thermometer score 0–10, ≥ 4 “clinical distress”) and presence of everyday problems in six domains: practical, social, emotional, physical, cognitive, and parenting. The DT-P was completed 4 weeks after the onset of SSNS. Total sum and individual items of everyday problems were compared with reference data from mothers and fathers of the Dutch general population. Results: There was no difference in clinically elevated parental distress between SSNS mothers (n = 37) and fathers (n = 25) and reference parents. Compared to reference fathers, fathers of a child with SSNS scored significantly higher on emotional problems (P = 0.030), while mothers experienced more parenting problems (P = 0.002). Regression analyses showed that lower parental age and having a girl with SSNS were significantly associated with more practical problems and higher distress thermometer scores, respectively. Conclusions: Four weeks after onset, SSNS mothers and fathers experience equal distress as reference parents. However, both parents endorsed significantly more everyday problems. Therefore, monitoring parental distress, even in the first weeks of the disease, could contribute to timely interventions and prevent worsening of problems. Clinical trial registry: Dutch Trial Register (https://onderzoekmetmensen.nl/en/trial/27331 ). Graphical abstract: [Figure not available: see fulltext.]
AB - Background:Steroid-sensitive nephrotic syndrome (SSNS) is associated with a relapsing–remitting course that can be stressful for parents. As little is known of parental distress at the first onset of SSNS, this study aims to describe parental distress and everyday problems in mothers and fathers of a child with newly diagnosed SSNS participating in a randomized controlled trial of levamisole added to corticosteroids. 'Methods: To assess distress, the Distress Thermometer for Parents (DT-P) was used, which includes questions on distress (thermometer score 0–10, ≥ 4 “clinical distress”) and presence of everyday problems in six domains: practical, social, emotional, physical, cognitive, and parenting. The DT-P was completed 4 weeks after the onset of SSNS. Total sum and individual items of everyday problems were compared with reference data from mothers and fathers of the Dutch general population. Results: There was no difference in clinically elevated parental distress between SSNS mothers (n = 37) and fathers (n = 25) and reference parents. Compared to reference fathers, fathers of a child with SSNS scored significantly higher on emotional problems (P = 0.030), while mothers experienced more parenting problems (P = 0.002). Regression analyses showed that lower parental age and having a girl with SSNS were significantly associated with more practical problems and higher distress thermometer scores, respectively. Conclusions: Four weeks after onset, SSNS mothers and fathers experience equal distress as reference parents. However, both parents endorsed significantly more everyday problems. Therefore, monitoring parental distress, even in the first weeks of the disease, could contribute to timely interventions and prevent worsening of problems. Clinical trial registry: Dutch Trial Register (https://onderzoekmetmensen.nl/en/trial/27331 ). Graphical abstract: [Figure not available: see fulltext.]
UR - http://www.scopus.com/inward/record.url?scp=85163367707&partnerID=8YFLogxK
U2 - 10.1007/s00467-023-06038-1
DO - 10.1007/s00467-023-06038-1
M3 - Article
C2 - 37380933
AN - SCOPUS:85163367707
SN - 0931-041X
VL - 38
SP - 4013
EP - 4022
JO - Pediatric Nephrology
JF - Pediatric Nephrology
IS - 12
ER -