title: Clinically meaningful interpretation of pediatric health-related quality of life in sickle cell disease.
abstract: 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.
authors.affiliation: *Department of Pediatrics, Children's Hospital of Wisconsin of the Children's Research Institute/Medical College of Wisconsin, Hematology/Oncology/Bone Marrow Transplantation, Milwaukee, WI †Department of Pediatrics, College of Medicine ‡Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University, College Station, TX.
authors.forename: Lauren M
authors.initials: LM
authors.lastname: Beverung
authors.forename: James W
authors.initials: JW
authors.lastname: Varni
authors.forename: Julie A
authors.initials: JA
authors.lastname: Panepinto
mesh_terms: D000293:Adolescent; D000755:Anemia, Sickle Cell / Q000150:complications / Q000523:psychology* / Q000628:therapy; D002648:Child; D002675:Child, Preschool; D005260:Female; D005500:Follow-Up Studies; D006304:Health Status; D006801:Humans; D008297:Male; D010146:Pain / Q000175:diagnosis* / Q000209:etiology / Q000523:psychology; D010147:Pain Measurement; D011379:Prognosis; D011594:Psychometrics; D011788:Quality of Life; D012720:Severity of Illness Index; D018434:Sickness Impact Profile