Vaso-occlusive painful events in sickle cell disease: impact on child well-being. Pediatr Blood Cancer 2010 Jan;54(1):92-7
Date
08/05/2009Pubmed ID
19653296Pubmed Central ID
PMC3114448DOI
10.1002/pbc.22222Scopus ID
2-s2.0-73349130023 (requires institutional sign-in at Scopus site) 79 CitationsAbstract
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 JAAuthor
Amanda Brandow DO Professor in the Pediatrics department at Medical College of WisconsinMESH terms used to index this publication - Major topics in bold
AdolescentAdult
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
