Family functioning and quality of life among children with nephrotic syndrome during the first pandemic wave

BACKGROUND: During the SARS-CoV-2 global pandemic, one of the longest lockdowns worldwide occurred in Ontario, Canada, during the first wave. For parents and children managing care at home and at risk for COVID-19, the impact on their psychosocial functioning is unknown. METHODS: A total of 122 families of children aged 2–18 years were enrolled as part of the prospective cohort of childhood nephrotic syndrome and completed a survey during the first wave of the pandemic (August 21–December 10), 2020. In a subset, 107 families had data available pre-pandemic to assess change. Validated measures included the McMaster Family Assessment Device (FAD) for parents and children ≥ 12 years for family functioning, the Patient Health Questionnaire for Depression and Anxiety (PHQ-4) for both parent and child, and Pediatric Quality of Life Inventory (PEDSQL™-V4) for children only. Scores were compared using Student’s t-test or the Mann–Whitney U test, as appropriate. RESULTS: Among the 107 children, 71% were male with a mean age of 9 years old at the time of questionnaire completion, and the mean age of parents was 41 years old. Parents and children reported that family functioning improved during COVID (parent: p < 0.01; child: p = 0.05). Children’s overall HRQOL declined (p = 0.04), specifically increased sleep disruption (p = 0.01). Increasing child age was associated with a greater sleep disruption (β = − 1.6 [IQR: − 2.6, − 0.67]) and a related decrease in QOL (β = − 1.0 [IQR: − 1.7, − 0.2]), adjusted for sex. CONCLUSIONS: Despite the positive effects of family dynamics during the first wave, there were negative effects of sleep disruptions and reduced quality of life in children, especially among older children. GRAPHICAL ABSTRACT: [Figure: see text] SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00467-022-05809-6.