Medical College of Wisconsin
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Clinically meaningful interpretation of pediatric health-related quality of life in sickle cell disease. J Pediatr Hematol Oncol 2015 Mar;37(2):128-33 PMID: 24942019 PMCID: PMC4269583

Pubmed ID





Health-related quality of life (HRQL) measures provide information about disease assessment; however, health care providers may be reluctant to use HRQL assessments as scores can be difficult to interpret. We sought to identify levels for impaired pain-related HRQL in children with sickle cell disease (SCD). Children (n=251) completed the Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales and PedsQL SCD Module in a multisite study. Using children's item scores on the Pain and Hurt and Pain Impact scales of the PedsQL SCD Module, High, Intermediate, and Low Functioning groups were created. We compared functioning groups with the Pain and Hurt and Pain Impact scale scores to determine levels representing high and low HRQL. These scores were compared with disease severity and the PedsQL Generic Core Scales. Scores of ≤60 on the PedsQL SCD Pain and Hurt and Pain Impact scales were associated with severe disease and met requirements for impaired functioning on the PedsQL Generic Core Scales. Scores of ≥81 on the Pain and Hurt and the Pain Impact scales can be considered consistent with good HRQL in those domains in SCD. Alternately, scores of ≤60 are cause for concern and suggest areas of HRQL impairment in SCD.

Author List

Beverung LM, Varni JW, Panepinto JA


Julie A. Panepinto MD, MSPH Professor in the Pediatrics department at Medical College of Wisconsin


2-s2.0-84924256397   5 Citations

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

Anemia, Sickle Cell
Child, Preschool
Follow-Up Studies
Health Status
Pain Measurement
Quality of Life
Severity of Illness Index
Sickness Impact Profile
jenkins-FCD Prod-310 bff9d975ec7f2d302586822146c2801dd4449aad