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.