Psychosocial Screening in Sickle Cell Disease: Validation of the Psychosocial Assessment Tool.

Abstract

Families of youth with Sickle Cell Disease (SCD) can face psychosocial adversity including emotional distress, functional impairments, and sociodemographic risk factors. Systematic screening of psychosocial risk can identify families who may benefit from further assessment and evidence-based care. The Psychosocial Assessment Tool (PAT) is a brief caregiver-report screener based on the tri-level Pediatric Psychosocial Preventative Health Model (PPPHM). Findings are presented from the baseline assessment of a longitudinal study validating a Sickle Cell version of the PAT 2.0. Primary caregivers of 136 youth with SCD receiving care through a multidisciplinary SCD clinic in a children's hospital completed the PAT and validation measures. A subset of 25 caregivers completed the PAT a second time within 3-5 weeks. Internal consistency for the total score was strong (α = .87), and for the subscales was moderate to strong (α = .74-.94), with the exception of the Family Structure (α = .38), Caregiver Beliefs (α = .48), and Stress Reactions (α = .56) subscales. Test-retest reliability was also strong (r = .86, p < .001). Moderate to strong correlations with all except two criteria measures provided validation for the total and subscale scores. Validation measures varied significantly across the three levels of the PPPHM. Results provide support for the reliability and validity of the PAT in SCD. Systematic screening with the PAT can help identify families of youth with SCD at risk for psychosocial problems and potentially help connect them to appropriate services.