Tool Reveals Psychosocial Stressors for Children With SCD

Use of a tool for psychosocial assessment in children with sickle cell disease (SCD) in a study provided insight on financial challenges, caregiver burden, and mental health concerns. Study results were reported in the journal BMC Health Services Research.

The study included caregivers of children with SCD receiving care at a comprehensive pediatric SCD clinic in the US Midwest. A goal of the study was determining the degree of psychosocial risk factors affecting participating families, with outcomes evaluated using the Psychological Assessment Tool (PAT), completed by participating caregivers at the initial clinic visit and annually thereafter.

The PAT is a caregiver-reported screener of family psychosocial risk, providing a total score from 7 domains or subscales. These include Family Structure/Resources, Social Support, Child Problems, Sibling Problems, Family Problems, Caregiver Stress Reactions, and Family Beliefs. The total score is categorized into 3 risk levels, including Universal (lowest risk, with a score of <1.00), Targeted (score of 1.00 to 2.00), and Clinical (highest risk, with a score of >2.00).

The analysis included evaluations of 246 PATs submitted by caregivers of 225 patients. Patients included 115 males and 110 females, and 96% of the patients were Black or African American. The average age of patients was 8.2 years (range, 0-22 years). Most children (approximately 83%) had public insurance, and 54% of caregivers considered their child to be aware of their diagnosis, while 45% were considered unaware due to being too young. Caregivers completing PATs were most often female, Black, single, over 21 years of age, and having a high school degree or higher education.

Evaluation of PAT results placed 66.7% of the patients in the Universal category, while 27.6% were placed in the Targeted category and 5.8% were placed in the Clinical category. Financial hardship, caregiver mental health concerns, and family stressors were significantly more common in Targeted or Clinical groups than was observed in the Universal category. 

Financial difficulty was reported in the PAT results for almost 50% of families across all risk categories. This included almost 40% of those in the Universal category, even though this group was associated with a lower total psychosocial risk. Additionally, approximately 53% of patients considered to have financial difficulties overall were included in the Universal category.

“Families of children with SCD face significant barriers, both social and psychological, which can have a significant impact on health outcomes for their child,” the study investigators wrote in their report.