title: Health-related Quality of Life in Infants With Sickle Cell Disease.
abstract: Using historical cohorts of healthy, acutely ill, and chronically ill infants for comparison, we sought to determine whether infants with sickle cell disease (SCD) have impaired health-related quality of life (HRQL). We conducted a cross-sectional study at 2 sites: the Medical College of Wisconsin/Children's of Wisconsin and the University of Alabama School of Medicine/Children's of Alabama. Parents of 90 infants with SCD completed the PedsQL Infant Module corresponding to their infant's age (1 to 12 mo or 13 to 24 mo) during a regular clinic visit. At 1 to 12 months, infants with SCD displayed lower Physical HRQL than healthy infants, but better HRQL than chronically ill infants. By 13 to 24 months, infants with SCD had worse HRQL in all areas than healthy infants and worse Physical and Total HRQL than acutely ill infants. Compared with chronically ill infants in this age group, infants with SCD had similar Physical HRQL and better Psychosocial and Total HRQL. By 13 to 24 months, a greater proportion of infants with SCD had impaired Physical and Total HRQL compared with infants aged 1 to 12 months. All differences were significant at the (P<0.05) level. Impaired HRQL can be detected in infants with SCD.
authors.affiliation: *Pediatrics †Divisions of Hematology/Oncology/Bone Marrow Transplant §Community Pediatrics, Medical College of Wisconsin/Children's Hospital of Wisconsin Milwaukee, WI ‡Division of Hematology/Oncology, University of Alabama at Birmingham/Children's Hospital of Alabama, Birmingham, AL.
authors.forename: Lauren M
authors.initials: LM
authors.lastname: Beverung
authors.forename: Christina
authors.initials: C
authors.lastname: Bemrich-Stolz
authors.forename: Sylvia
authors.initials: S
authors.lastname: Torres
authors.forename: Julie A
authors.initials: JA
authors.lastname: Panepinto
mesh_terms: D000208:Acute Disease; D000407:Alabama; D000755:Anemia, Sickle Cell / Q000523:psychology*; D002675:Child, Preschool; D002908:Chronic Disease; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D010290:Parents / Q000523:psychology; D002666:Psychology, Child; D011788:Quality of Life; D063189:Symptom Assessment; D014922:Wisconsin