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. 2025 Nov 26.
doi: 10.1007/s00467-025-07073-w. Online ahead of print.

Mental health among caregivers of children with nephrotic syndrome: a prospective cohort study

Tanay Joshi  1   2 , Cal H Robinson  3   4 , Nowrin Aman  2   5 , Tonny H M Banh  2 , Josefina Brooke  2 , Valentina Bruno  6 , Rahul Chanchlani  7   8 , Vaneet Dhillon  2 , Mackenzie GarnerCKiD Chronic  2 , Leo Levin  6 , Christoph Licht  6 , Ashlene M McKay  6 , Rachel Pearl  6   9 , Seetha Radhakrishnan  6 , Nithiakishna Selvathesan  6 , Chia Wei Teoh  6 , Jovanka Vasilevska-Ristovska  6   5 , Hubert Wong  6 , Rulan S Parekh  2   6   5
Affiliations

Mental health among caregivers of children with nephrotic syndrome: a prospective cohort study

Tanay Joshi et al. Pediatr Nephrol. .

Abstract

Background: Caregivers of children with nephrotic syndrome may experience psychological challenges due to the disease's unpredictability and home monitoring burden. Prevalence and risk factors of distress, anxiety, and depression among these caregivers are unknown.

Methods: We analyzed data from Insight into Nephrotic Syndrome: Investigating Genes, Health, and Therapeutics, a prospective observational childhood nephrotic syndrome cohort. We included children (1-18 years) diagnosed from 1996-2023 from the greater Toronto area, Canada, and their caregivers. Children had annual study visits for five years. Caregivers were screened for anxiety and depression using the Patient Health Questionnaire-4 annually. We evaluated risk factors for psychological distress using mixed effects models.

Results: We analyzed data from 733 children with nephrotic syndrome (median age at diagnosis: 4 [IQR 3-6] years; 460 [73%] male; 242 [33%] South Asian; 690 [94%] steroid-sensitive). Median follow-up was 5.4 (IQR 3.0-9.3) years. Caregivers of 261 (36%) children experienced ≥ mild, 101 (14%) experienced ≥ moderate, and 38 (5%) experienced severe psychological distress. Caregivers of 167 (23%) children screened positive for anxiety and 90 (12%) for depression during follow-up. Risk factors for psychological distress were younger child age, parental unemployment, worse child quality-of-life, worse family functioning, language barrier, active steroid treatment, and lack of steroid-sparing treatment. Distress was associated with a higher probability of subsequent steroid-sparing medication initiation (adjusted odds ratio 1.08, 95%CI 1.02-1.15), although residual confounding and reverse causation cannot be excluded.

Conclusions: Over one-third of caregivers experienced mild or greater psychological distress, 23% screened positive for anxiety, and 12% for depression. Child and caregiver demographics, treatment response, and socioeconomic elements were predictive of caregiver distress.

Keywords: Anxiety; Caregiver; Depression; Nephrotic syndrome; Pediatric; Psychological distress.

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Conflict of interest statement

Declarations. Research ethics and consent: Research ethics approval for INSIGHT was obtained from The Hospital for Sick Children (Toronto, Canada). Informed consent for the study was obtained from all caregivers. Assent was obtained from all children with capacity to provide it. Disclosures: All authors declare no real or perceived conflicts of interest that could affect the study design, collection, analysis and interpretation of data, writing of the report, or the decision to submit for publication.

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