Health-related Quality of Life in Children and Adolescents With Sickle Cell Disease

Juanita Conkin Dale, Cindy J. Cochran, Lonnie Roy, Ethel Jernigan, George R. Buchanan

Research output: Contribution to journalArticle

43 Scopus citations

Abstract

Objective: To assess health-related quality of life (HRQOL) in children and adolescents with sickle cell disease (SCD). Design, Setting, and Participants: The PedsQL 4.0 Generic Scales, a multidimensional self-report instrument that has been shown to be valid and reliable for use in children and adolescents with chronic illness, consists of 23 items that assess physical, emotional, social, and school functioning. Questionnaires were administered to 124 children and adolescents (ages 8 to 18 years, child self-report) with SCD (100 sickle cell anemia, 24 sickle β zero thalassemia) and their parents (parent-proxy report). Summary scores for children's and parents' ratings of overall HRQOL and psychosocial health and subscale scores for physical, emotional, social, and school functioning were compared with published data for healthy children. Both summary and subscale scores for children with SCD also were compared with those of their parents. Results: Children with SCD and their parents rated overall HRQOL and all subdomains of HRQOL lower than did healthy children and their parents (P < .001). Children with SCD rated their own HRQOL significantly better than their parents did for overall HRQOL and all subdomains (P < .001) except emotional functioning (P = .06). Conclusions: Children with SCD and their parents perceived overall HRQOL and all HRQOL subdomains to be lower than scores reported in healthy children. Therefore, successful therapeutic efforts to improve HRQOL could represent important advances in the health of children with SCD.

Original languageEnglish (US)
Pages (from-to)208-215
Number of pages8
JournalJournal of Pediatric Health Care
Volume25
Issue number4
DOIs
StatePublished - Jul 1 2011

Keywords

  • Children and adolescents
  • Chronic illness
  • Health-related quality of life
  • Quality of life
  • Sickle cell disease

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

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