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

2020 ◽  
Vol 45 (4) ◽  
pp. 423-433 ◽  
Author(s):  
Steven K Reader ◽  
Colleen N Keeler ◽  
Fang Fang Chen ◽  
Nicole M Ruppe ◽  
Diana L Rash-Ellis ◽  
...  

Abstract Objective 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). Methods 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. Results 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. Conclusions 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.

2012 ◽  
Vol 37 (9) ◽  
pp. 1031-1040 ◽  
Author(s):  
C. W. Karlson ◽  
S. Leist-Haynes ◽  
M. Smith ◽  
M. A. Faith ◽  
T. D. Elkin ◽  
...  

2015 ◽  
Vol 41 (4) ◽  
pp. 397-405 ◽  
Author(s):  
Lori E. Crosby ◽  
Naomi E. Joffe ◽  
Nina Reynolds ◽  
James L. Peugh ◽  
Ellen Manegold ◽  
...  

2020 ◽  
Vol 14 (1) ◽  
pp. 263-284
Author(s):  
Aindrea B. Maddray ◽  
Shannon M. Phillips

Background & Purpose: The purpose of this review is to examine instruments that measure providers' perceptions of adult patients with Sickle Cell Disease (SCD), examine instruments that measure adult patients with SCD perceptions of providers' behaviors, and determine optimal instruments to use in evaluating the perceptions of Emergency Department (ED) providers and adult patients with SCD of one another's behaviors after an interaction in the ED. Methods: An integrative review was conducted searching EBSCOhost and PubMed databases using the keywords: measure [OR] measure* [OR] assess* [OR] scale [OR] survey [OR] tool [AND] stigma* [OR] stereotype [OR] prejudice [OR] bias [OR] perception [OR] attitude [OR] discrimination [OR] racism [OR] behavior [AND] interaction [OR] relationship [OR] communication [AND] sickle cell. Initial search located 256 articles, but only 15 articles were included in the final review. Results: Fifteen articles reporting six instruments were reviewed. Four instruments evaluated a provider’s perceptions of patients with SCD behaviors, and two instruments evaluated how patients with SCD perceived provider behaviors. The two patient-focused instruments and three provider-focused instruments were found to be adequately reliable and valid according to the Psychometric Grading Framework (PGF). Conclusions: The findings suggest that the General Perceptions About Sickle Cell Disease Patients Scale would be an optimal instrument to evaluate ED providers' perceptions of adult patients with SCD behaviors. One patient-focused instrument, The Sickle Cell Health-Related Stigma Scale (SCD-HRSS), reported adequate reliability and validity but was not specific to measuring the patient's perceptions of ED providers' behaviors, nor was it administered in the ED environment. The SCD-HRSS Doctors subscale has potential adaptability for use in measuring patients with SCD perceptions of ED provider behaviors in the ED environment.


2013 ◽  
Vol 61 (1) ◽  
pp. 171-177 ◽  
Author(s):  
Julie A. Panepinto ◽  
Sylvia Torres ◽  
Cristiane B. Bendo ◽  
Timothy L. McCavit ◽  
Bogdan Dinu ◽  
...  

2013 ◽  
Vol 60 (8) ◽  
pp. 1338-1344 ◽  
Author(s):  
Julie A. Panepinto ◽  
Sylvia Torres ◽  
Cristiane B. Bendo ◽  
Timothy L. McCavit ◽  
Bogdan Dinu ◽  
...  

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 2373-2373
Author(s):  
Carla Hasson ◽  
Lisa Veling ◽  
Juan Felipe Rico ◽  
Rahul Mhaskar

Abstract Chronic blood transfusions are standard of care for stroke prevention in sickle cell disease. We evaluated hydroxyurea's efficacy in preventing silent stroke. We searched for randomized controlled trials (RCTs) and observational studies on Pubmed, CENTRAL, Embase, and Web of Science without using language/time limits. Eligible studies compared hydroxyurea with transfusions or observation to prevent silent stroke. This systematic review adheres to the Cochrane guidelines. Data were pooled using random effects model using STATA to perform meta-analysis. Methodological quality of RCTs was investigated using the Cochrane risk of bias assessment tool, while observational studies were assessed using the Downs & Black Checklist for Study Quality. One RCT enrolling 121 participants was included. There were no strokes, silent strokes, or deaths reported in either arm. There was no difference between hydroxyurea versus chronic blood transfusions (RR 1.52, 95% CI 0.57 to 4.02, P = 0.39) for adverse events. We included 10 observational studies, with 361 participants receiving hydroxyurea. There were no deaths attributed to hydroxyurea. Approximately 1% (I2 = 48.67%, 95% CI 0.0 to 0.05, 314 participants, seven comparisons) of patients receiving hydroxyurea had stroke. Approximately 18% (I2 = 91.37%, 95% CI 0.03 to 0.4, 266 participants, six comparisons) of the hydroxyurea patients had silent stroke. Approximately 24% (I2 = 88.54%, 95% CI 0.02 to 0.57, 91 participants, four comparisons) of the hydroxyurea patients had adverse events attributed to hydroxyurea. Our findings suggest that hydroxyurea is safe and may prevent silent stroke and stroke. More high-quality studies are needed. Disclosures No relevant conflicts of interest to declare.


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