Screening for Psychosocial Risk in Pediatric Sickle Cell Disease

Nemours Children'S Hospital, Delaware, Wilmington DE

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Abstract

Although the importance of psychosocial screening in sickle cell disease (SCD) has been emphasized by the National Heart Lung and Blood Institute and the American Academy of Pediatrics, screening is not currently implemented in a systematic manner, due in part to the lack of reliable, valid, and culturally sensitive screening instruments. The proposed mentored research will investigate the Psychosocial Assessment Tool (PAT) as an acceptable evidence-based caregiver-report screener of psychosocial risk and resilience in pediatric SCD. PAT items reflect theoretically and clinically relevant domains based on social ecological theory and the Pediatric Preventative Psychosocial Health Model. To date, the PAT has been used primarily in the pediatric cancer population. Given potential distinctions between SCD and pediatric cancers, particulariy with respect to socioeconomic characteristics, health disparities, cultural factors, and the ongoing burden of the disease, it is critical to establish reliable and valid aspects of psychosocial risk specific to SCD. Part 1 of this research proposal uses a mixed-methods approach to evaluate the acceptability of completing the PAT in a sample of 30 primary caregivers of children (birth to 21 years) with SCD. These caregivers will be asked to provide qualitative feedback regarding their experience of completing the PAT, to inform the need to modify the PAT to better fit the SCD population, rendering a SCD version of the PAT (PAT-SC). In Part 2, 170 primary caregivers of children (birth to 20 years) will be recruited to complete the PAT-SC and other clinically relevant outcome measures at three time points (baseline, 6-month, and 12-month follow up). Clinically important health and school outcomes will be assessed through the electronic health record and school data, which will also be gathered at the three time points. Data analyses will include exploratory and confirmatory factor analyses, tests of association of the PAT-SC and clinically relevant health outcomes, and psychometric evaluations (reliability, validity). At the conclusion of the study we anticipate having an acceptable and valid psychosocial screener that can enhance the delivery of evidence based care to SCD families in order to reduce health disparities and promote wellbeing.