scholarly journals PedsQL™ multidimensional fatigue scale in sickle cell disease: Feasibility, reliability, and validity

2013 ◽  
Vol 61 (1) ◽  
pp. 171-177 ◽  
Author(s):  
Julie A. Panepinto ◽  
Sylvia Torres ◽  
Cristiane B. Bendo ◽  
Timothy L. McCavit ◽  
Bogdan Dinu ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Reliability And Validity ◽  
Cell Disease ◽  
Multidimensional Fatigue Scale

scholarly journals Instruments to Measure Perceptions in the Emergency Department Provider-Patient with Sickle Cell Disease Interaction: Findings of an Integrative Review from a Ph.D. Project

2020 ◽  
Vol 14 (1) ◽  
pp. 263-284
Author(s):  
Aindrea B. Maddray ◽  
Shannon M. Phillips
Keyword(s):  
Emergency Department ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Reliability And Validity ◽  
Adult Patients ◽  
Integrative Review ◽  
Cell Disease ◽  
Related Stigma ◽  
Health Related ◽  
Adequate Reliability

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.

scholarly journals PedsQL™ sickle cell disease module: Feasibility, reliability, and validity

2013 ◽  
Vol 60 (8) ◽  
pp. 1338-1344 ◽  
Author(s):  
Julie A. Panepinto ◽  
Sylvia Torres ◽  
Cristiane B. Bendo ◽  
Timothy L. McCavit ◽  
Bogdan Dinu ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Reliability And Validity ◽  
Cell Disease ◽  
Disease Module

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 ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Assessment Tool ◽  
Reliability And Validity ◽  
Psychosocial Problems ◽  
Psychosocial Assessment ◽  
Stress Reactions ◽  
Functional Impairments ◽  
Cell Disease ◽  
Systematic Screening

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.

Caregiver report of pain in infants and toddlers with sickle cell disease: Reliability and validity of a daily diary

2002 ◽  
Vol 3 (1) ◽  
pp. 50-57 ◽  
Author(s):  
Beth Ely ◽  
Carlton Dampier ◽  
Miriam Gilday ◽  
Patricia O'Neal ◽  
Darcy Brodecki
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Reliability And Validity ◽  
Daily Diary ◽  
Infants And Toddlers ◽  
Cell Disease ◽  
Caregiver Report

Reliability and validity of a self-efficacy instrument specific to sickle cell disease

2000 ◽  
Vol 38 (9) ◽  
pp. 951-963 ◽  
Author(s):  
Robert Edwards ◽  
Joseph Telfair ◽  
Heather Cecil ◽  
Jennifer Lenoci
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Self Efficacy ◽  
Reliability And Validity ◽  
Cell Disease

Hemolysis in sickle cell disease

1974 ◽  
Vol 133 (4) ◽  
pp. 624-631 ◽  
Author(s):  
T. A. Bensinger
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease
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