Abstract
Introduction Approximately 40% of individuals with sickle cell disease (SCD) have mental health symptoms including depression and anxiety. Furthermore, worse mental health is associated with lower quality of life (QOL) in cross sectional studies. However, longitudinal changes in mental health and subsequent change in QOL and self-management have largely not been evaluated in adults with SCD.
Methods Adults with SCD at a large Mid Atlantic SCD clinic completed online surveys at baseline, 6, and 12 months between March and July 2020 (n = 99) that included the Patient Health Questionnaire (PHQ-9), General Anxiety Disorder Scale (GAD-7), Adherence to Refills and Medications Scale (ARMS), and Adult Sickle Cell QOL Measurement Information System (ASCQ-Me). Participants with GAD-7 and PHQ-9 scores greater than or equal to 10 were considered to have clinically significant anxiety and depression symptoms. We fit mixed-effects linear regression models using maximum likelihood estimation to assess the association between clinically significant mental health symptoms (PHQ-9 and GAD-7) and outcomes including: QOL (ASCQ-Me subscales) and self-reported adherence (ARMS) over time. Based on their symptoms of depression, anxiety, and either depression or anxiety, we categorized participants as having improved clinically significant mental health symptoms, persistent symptoms, or no symptoms at any time. Models were adjusted for sex, gender, and genotype. Beta estimates and p-values were reported relative to the improved group.
Results Participants with improved mental health symptoms had greater ASCQ-Me and ARMS improvement at both 6 and 12 months compared to participants with persistent symptoms and those without any. Specifically, participants with improvement in depression had improvements in ASCQ-Me subscales: Social Function (β = 9.13, p = 0.019) and Sleep (β = 7.00, p = 0.005) compared to those with persistent symptoms. Relative to participants without depressive symptoms, those with improved symptoms also had improvements for Sleep (β = 6.70, p < 0.001) and Social Function (β = 7.93, p = 0.009). At 12 months, participants with improved anxiety symptoms had improvements in ARMS (β = 3.96, p = 0.020) and Sleep (β = 6.79, p = 0.027) compared to those with persistent symptoms. In addition, relative to participants without anxiety symptoms, those with improved symptoms had improvements in the ASCQ-Me subscales: Emotion (β = 8.09, p = 0.001), Pain (β = 6.48, p = 0.025), and Sleep (β = 4.47, p = 0.039). Among participants with clinically significant depression, anxiety, or both, those with improvement had ASCQ-Me subscale improvement for Social Function at 12 months (β = 7.60, p = 0.038) compared to those with persistent symptoms. Compared to participants without symptoms at 12 months, they also had improvements in the ASCQ-Me subscales: Emotion (β = 4.77, p = 0.045), Pain (β = 9.32, p = 0.002), and Sleep (β = 4.94, p = 0.010). Furthermore, among participants with improved mental health, the mean difference scores for Sleep and Social Function increased by approximately 10 points, equivalent to 1 standard deviation according to ASCQ-Me's T-score metric (x̄ = 50, SD = 10).
ConclusionsImprovements in mental health were consistently associated with those with better sleep and social function, as measured by ASCQ-Me, highlighting the measure's sensitivity to changes in mental health status. Given that this data was collected during 2020, it is important to note that the high baseline levels of anxiety and depressive symptoms may have been in response to the COVID 19 pandemic. Additionally, for individuals with anxiety symptoms, improved mental health was significantly associated with improved treatment adherence, which may be a possible mechanism for improved QOL. Altogether, these findings highlight the critical role of mental health in managing SCD, where psychological recovery may contribute to sustained improvements in both physical health and day-to-day functioning.
