TY - JOUR
T1 - Health-related Quality of Life in Children and Adolescents With Sickle Cell Disease
AU - Dale, Juanita Conkin
AU - Cochran, Cindy J.
AU - Roy, Lonnie
AU - Jernigan, Ethel
AU - Buchanan, George R.
N1 - Funding Information:
This study was partially funded by grants from the Children's Medical Center Foundation and the National Institutes of Health ( U54 HL70588 ).
PY - 2011/7
Y1 - 2011/7
N2 - 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.
AB - 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.
KW - Children and adolescents
KW - Chronic illness
KW - Health-related quality of life
KW - Quality of life
KW - Sickle cell disease
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U2 - 10.1016/j.pedhc.2009.12.006
DO - 10.1016/j.pedhc.2009.12.006
M3 - Article
C2 - 21700135
AN - SCOPUS:79959334258
SN - 0891-5245
VL - 25
SP - 208
EP - 215
JO - Journal of Pediatric Health Care
JF - Journal of Pediatric Health Care
IS - 4
ER -