Insight into Nephrotic Syndrome: Investigating Genes, Health, and Therapeutics (INSIGHT) is a prospective cohort study of children with nephrotic syndrome, ages 6 months–18 years, conducted at the Hospital for Sick Children in Toronto, Ontario, approved by the Research Ethics Board (ClinicalTrials.gov Identifier: NCT01605266)[9]. Per protocol, families complete questionnaires at baseline and annual follow-ups using the same validated measures of well-being as used in this study [9]. Among the recruited children in INSIGHT, 122 families completed a survey to assess parental and child well-being during the first wave of the COVID-19 pandemic from August 21 to December 10, 2020. In a subset (n = 107 families), we compared the available pre-pandemic data prior to February 29, 2020, and assessed the changes during the pandemic. Questionnaires were completed by emails, phone calls, or during clinic visits.

Validated measures of well-being for parents included the General Functioning Scale of the FAD and PHQ-4 [10, 11]. A validated measure of well-being in children included the age-specific PEDSQL™-V4 [12].

The general functioning subscale of family assessment is a 12-item parent-report scale that measures family functioning. The scale is composed of six positive items that assess healthy family functioning and six items that assess unhealthy functioning [10]. Scoring for each of the items is on a 4-point Likert scale ranging from 1 = strongly agree to 4 = strongly disagree, with the scale for negatively worded items reversed, and the total score is divided by the number of items to provide a score ranging from 1.00 to 4.00, with a cut-off score of < 2.00 indicating better family functioning. Children ≥ 12 years also completed the McMaster Family Assessment Device [10].

The PHQ-4 is a 4-item composite screening tool for assessing anxiety and depression in parents [11]. Parents were asked to rate their frequency of 2-item anxiety and 2-item depressive symptoms over the past 2 weeks on a 4-point Likert scale (0–3; 0 = not at all, 1 = several days, 2 = more than half the days, and 3 = nearly every day). A cut-off score of ≥ 3 in each anxiety or depression category was used for an indication of mental health conditions [11].

The PEDSQL™-V4 is a 41-item parent report or self-report measure that assesses children’s HRQOL and fatigue for the past 1 month [12]. It is composed of a 23-item generic core scale comprising physical functioning (8 items), emotional functioning (5 items), social functioning (5 items), and school functioning (5 items), and an 18-item multidimensional fatigue scale comprising three 6-item domains of general fatigue, sleep/rest fatigue, and cognitive fatigue [12]. Responses were recorded on a 5-point Likert scale (0–4; 0 = not at all a problem; 4 = almost always a problem), and items on each domain are reverse scored and transformed to a scale of 0–100 (0 = 100, 1 = 75, 2 = 50, 3 = 25, and 4 = 0), with higher scores indicating better HRQOL and lower fatigue symptoms [12]. For reference, healthy children have a mean score of 83 ± 15.40 [13]. The school functioning domain is not administered during the summer months as per standard protocol.

Parent and child characteristics were summarized using descriptive statistics, and well-being scores were compared pre- and post-COVID-19 outbreak using the Student’s t-test or the Mann–Whitney U test, as appropriate. We examined the association of demographic characteristics with PEDSQL scores that were found to be statistically different by t-test or Mann–Whitney U test using linear regression.