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Randomized Controlled Trial
. 2023 Dec;38(12):4013-4022.
doi: 10.1007/s00467-023-06038-1. Epub 2023 Jun 28.

Distress in parents of children with first-onset steroid-sensitive nephrotic syndrome

Floor Veltkamp  1   2 , Hedy A van Oers  2   3   4 , Lorynn Teela  2   3   4 , Elske M Mak-Nienhuis  1 , Lotte Haverman #  2   3   4 , Antonia H M Bouts  5   6   7 ; LEARNS consortium
Collaborators, Affiliations
Randomized Controlled Trial

Distress in parents of children with first-onset steroid-sensitive nephrotic syndrome

Floor Veltkamp et al. Pediatr Nephrol. 2023 Dec.

Abstract

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 ). A higher resolution version of the Graphical abstract is available as Supplementary information.

Keywords: First onset; Parental distress; Steroid-sensitive nephrotic syndrome.

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Conflict of interest statement

The authors declare no competing interests.

Figures

None
A higher resolution version of the Graphical abstract is available as Supplementary information
See this image and copyright information in PMC

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