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.