Discussion:
Using a self-administered standardized assessment of mental health
symptoms during the initial months of COVID-19 pandemic, we assessed
youth with SCD and their caregivers from a sample of dyads enrolled in
our hydroxyurea adherence trial. We had hypothesized that
pandemic-related social and health concerns would precipitate depression
and other mental health symptoms. Comparing largely pre-pandemic results
from a different self-assessment tool of depressive symptoms, prevalence
of mental health symptoms appeared to have shifted over time: fewer
youth and more caregivers were affected during the pandemic.
Nonetheless, a substantial proportion of both groups lacked optimism
about the future.
Mental health responses may have reflected pandemic-associated burdens,
living with SCD and/or social stressors associated with social
vulnerability. In a survey comparing adult childhood cancer survivors to
their unaffected siblings, the former more frequently reported health
concerns and social isolation. Those data suggest that mental health
concerns can be exacerbated by feelings of vulnerability from chronic
illness.21
Established associations exist between depression and medication
non-adherence in chronic illnesses of youth and adults, including
adolescents living with SCD.22-24 Hence, the finding
of frequent depression at trial enrollment was not surprising.
Interestingly, fewer youth reported mental health symptoms in the
pandemic survey. This result lead us to speculate that some regular
social stressors may have lessened during the pandemic, even as
stressors affected more caregivers. Nonetheless, youth depression scores
in our sample at enrollment were only modestly higher than those
reported in a sample with SCD of similar age prescribed hydroxyurea at
another pediatric SCD center.25 These similarities in
findings suggest that depression in adolescents with SCD is common, as
recently reported from a large multinational survey of adults with
SCD.26
Mental health symptoms among U.S. adults during the COVID-19 pandemic
significantly increased compared to pre-pandemic levels, with especially
high frequencies among those of minoritized racial and ethnic
groups.27,28 Adolescents overall appear to be
sensitive to the pandemic’s social impacts, and families affected by SCD
may be especially vulnerable.29
Study limitations included the modest sample size with limited
statistical power to detect differences. Survey participation was
offered to the convenient sample of HABIT participants rather than
broadly to youth with SCD and their primary caregivers at participating
clinical sites. Use of two different self-reported assessment tools pre-
and during the pandemic prevented direct comparisons. Survey questions
adjusted for youth participants lacked independent validation.
Respondents may have slanted responses towards those perceived as more
socially acceptable regarding mental health symptoms and/or food
insecurity. Our methodology precluded further probing about the mental
health symptoms and their potential impact on health, quality of life or
other features.
In conclusion, screening for mental health symptoms, social disruption,
verbal abuse and food insecurity may be warranted in this high-risk
group of social and medical vulnerability, especially during the
pandemic.30 Interventions for these families, e.g.,
state or federal aid programs and/or available mental health services,
may help support the health and mental health of youth with SCD and
their caregivers.