Clinically meaningful interpretation of pediatric health-related quality of life in sickle cell disease. J Pediatr Hematol Oncol 2015 Mar;37(2):128-33
Date
06/20/2014Pubmed ID
24942019Pubmed Central ID
PMC4269583DOI
10.1097/MPH.0000000000000177Scopus ID
2-s2.0-84924256397 (requires institutional sign-in at Scopus site) 39 CitationsAbstract
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 JAMESH terms used to index this publication - Major topics in bold
AdolescentAnemia, Sickle Cell
Child
Child, Preschool
Female
Follow-Up Studies
Health Status
Humans
Male
Pain
Pain Measurement
Prognosis
Psychometrics
Quality of Life
Severity of Illness Index
Sickness Impact Profile
