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Journal of Pediatric Psychology Advance Access published online on April 9, 2008
Journal of Pediatric Psychology, doi:10.1093/jpepsy/jsn036
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© The Author 2008. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oxfordjournals.org

Validity of the Pediatric Quality of Life Inventory for Youth with Sickle Cell Disease

Catherine B. McClellan, PhD1, Jeffrey Schatz, PhD1, Carmen Sanchez, BS1 and Carla W. Roberts, MD2

1Department of Psychology and 2Department of Pediatrics, University of South Carolina

All Correspondence concerning this article should be addressed to Catherine B. McClellan, Department of Psychology, University of South Carolina, Columbia, SC 29208, USA. E-mail: mcclellb{at}gwm.sc.edu


  Abstract

Objective Evaluate the validity of the Pediatric Quality of Life Inventory (PedsQL) for sickle cell disease (SCD). Methods Sixty-eight parent–child dyads (children 5–18 years) completed the PedsQL. Medical record review assessed history of specific morbidities. Results Internal consistency of the scales varied. The strongest reliability was for parent proxy-report for specific domains or for global functioning scores with either informant. Modest internal consistency was found for specific domains with child informants, particularly for younger children. Moderate convergent validity was found between informants. History of neurologic problems or major pain episodes indicated criterion validity for specific scales. Conclusions The PedsQL appears to validly assess quality of life in youth with SCD. Domain-specific measurement of quality of life was limited by (a) low reliability for youth-report and (b) lack of discriminant validity. Choice of informant may be important when evaluating quality of life effects from pain or neurologic problems in SCD.

Key words: disease complications; pediatric; quality of life; sickle cell disease.

Received July 18, 2007; revision received March 17, 2008; accepted March 18, 2008


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