Introduction
Most people living with sickle cell disease (SCD) in the United States (U.S.) identify as Black and/or Latino,1 whose communities are disproportionately under-resourced and vulnerable to adverse social factors.2-4 Social, environmental and disease-related factors render youth with SCD and their caregivers susceptible to mental health issues, e.g. stress and depression.5-8
Societal disruptions during the 2020 COVID-19 pandemic included prolonged school and workplace closures, social isolation and economic insecurity disproportionately affected communities with lower socio-economic status.9-12 People with SCD experienced increased complications and hospitalizations from COVID-19 infection compared to other Blacks.13,14 Pandemic-related health concerns may have added to mental health risk among SCD-affected families.
Fifty dyads of youth with SCD ages 10-18 years and their primary caregivers enrolled in our multi-site randomized, controlled trial, HABIT (“Hydroxyurea Adherence for Personal Best in Sickle Cell Treatment”), to improve youth’s diminished adherence to hydroxyurea therapy.15 The HABIT trial was conducted from 2018 through 2021 at four pediatric SCD centers in New York City and Philadelphia. Trial enrollment occurred between May 2018 and December 2020, with 89% enrolled prior to the March 2020 onset of the COVID-19 pandemic. Participants completed the pediatric and adult PROMIS® measure for depressive symptoms at trial enrollment.16 At pandemic onset, study visits were largely converted to virtual platforms. The Social Vulnerability Index (SVI), a composite scale estimating vulnerability to social adversity by U.S. census tract, was calculated using pre-pandemic standards. SVI ranges from 0-1.0; higher values represent greater vulnerability.17 Nationally, high SVI, including minority status, was associated with increased COVID-19 infections.18
We hypothesized that mental health symptoms were common among HABIT dyads during the early months of the COVID-19 pandemic, and that food insecurity, a measure of economic instability, was frequently experienced.3 Enrolled dyads were offered participation in an open-access pandemic-focused online survey of standardized adult core mental health symptoms from June-October, 2020.19 We minimally adapted the survey questions for study youth. The pandemic-focused survey obtained self-reported mental health symptoms and behaviors experienced during the preceding week: nervous, anxious or “on edge”; depressed; lonely, or any> 1 of these; not feeling hopeful about the future; physical reactions (e.g. sweating, nausea, palpitations, or “trouble breathing”) when thinking about the pandemic. Reponses of> 1 days were scored as having symptoms. Questions also gauged changes in school or work arrangements, history of mental health conditions, current substance abuse and experience of verbal abuse. We added a pair of validated screening questions about food insecurity.20 Spanish survey translations were available as preferred. Participants identifying specific “red flag” issues (frequent mental health symptoms, food insecurity or substance abuse) were referred to their site’s social services. Dyad responses were compared using McNemar’s test. Institutional review board approval was obtained at each study site.