147 - Assessing Psychosocial Risk Factors in Children with Sickle Cell Disease

Most individuals with sickle cell disease (SCD) in the U.S. identify as Black or African American, a minoritzed population who experiences disparities in healthcare access and treatment. For individuals managing a chronic health condition like SCD, psychosocial stressors resulting from and impacted by systemic racism can lead to worse health outcomes.


Objective:

The purpose of this study was to determine the psychosocial risk factors for families caring for children with SCD at a comprehensive pediatric sickle cell center, and to assess the utility of the Psychosocial Assessment Tool (PAT), a validated caregiver-report screener, in this setting.


Design/Methods: The PAT is administered annually as part of the clinical visit and scored by the SCD Social Worker to provide tailored resources to families. Scores are stratified into 3 categories indicating level of psychosocial concerns - Universal, Targeted, or Clinical (least concerns to most). PATs administered between July 2021-December 2022 were analyzed, with descriptive statistics performed to determine demographics, experiences, beliefs, and overall risk categorization, as well as regression analyses to compare PAT category to individual subscales.

Results: Two hundred forty-nine caregivers were given the PAT with 238 completed for analysis. Most caregivers identified as Black, single women over 21 years of age with at least a high school degree. The average patient age was 8.19 years (range 0-22 years). Sixty-six percent of PATs fell into the Universal range, 28% in the Targeted range, and 5% in the Clinical range. Caregivers/patients that scored in the Targeted or Clinical category were more likely than those in the Universal category to report financial hardship, caregiver mental health concerns, family stressors, developmental concerns with a sibling, and fewer people who support patient/family (
p

< 0.05). The Family Structure/Resources Subscore had the highest average, and includes questions about insurance coverage, transportation, and money problems (Table 1). Forty-eight percent of families reported some form of financial difficulty, including 39% of all families in the Universal category (Figure 1).

Conclusion(s): Implementation of a psychosocial risk screener in the SCD clinic identified financial challenges for many families, as well as caregiver burden and mental health concerns, allowing for timely resource support. Many of these families, however, were categorized as Universal, indicating that distribution of resources and support must not be based on total PAT score/category alone.