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Vaso-occlusive painful events in sickle cell disease: impact on child well-being. Pediatr Blood Cancer 2010 Jan;54(1):92-7

Date

08/05/2009

Pubmed ID

19653296

Pubmed Central ID

PMC3114448

DOI

10.1002/pbc.22222

Scopus ID

2-s2.0-73349130023   69 Citations

Abstract

BACKGROUND: This study describes how painful events affect the health-related quality of life (HRQL) of children with sickle cell disease (SCD) and determines the responsiveness of a generic HRQL measure in SCD. Our hypotheses were twofold: (1) HRQL is significantly impaired at presentation to the emergency department for a painful event and (2) PedsQL 4.0 Acute Version Generic Core Scales is responsive to change in the evolution of a painful event.

PROCEDURE: This prospective cohort study included 57 children with SCD. HRQL was measured with the Acute Version of the PedsQL 4.0 Generic Core Scales, completed by child (self-report) and caregiver (proxy report) at presentation and 7 days post-discharge. Independent comparisons of HRQL scores were made between children in the study cohort and a published reference sample of children with SCD in baseline health (historical SCD controls).

RESULTS: Median PedsQL scores at presentation were significantly lower than historical SCD controls in all domains for child self-report and all domains except social and school functioning in parent-proxy. Clinically and statistically significant changes in HRQL between presentation and post-discharge resulted in similar HRQL scores at 7 days post-discharge to historical SCD controls.

CONCLUSIONS: The PedsQL is responsive to change; thus a useful tool to measure the impact of interventions in future SCD clinical trials. Painful events significantly diminish all domains of HRQL and this improves 7 days post-discharge.

Author List

Brandow AM, Brousseau DC, Pajewski NM, Panepinto JA

Authors

Amanda Brandow DO Professor in the Pediatrics department at Medical College of Wisconsin
David Brousseau MD Chief, Professor in the Pediatrics department at Medical College of Wisconsin




MESH terms used to index this publication - Major topics in bold

Adolescent
Adult
Anemia, Sickle Cell
Child
Child, Preschool
Cohort Studies
Female
Health Status
Humans
Male
Pain
Pain Measurement
Prospective Studies
Quality of Life
Vascular Diseases
Young Adult