title: Health-related quality of life in sickle cell disease.
abstract: Advances in drug therapy, hematopoietic stem cell transplantation, and technology have improved the morbidity and survival for those with sickle cell disease. The effect of this modern therapy on the health-related quality of life (HRQL) of those with sickle cell disease is not known. HRQL provides an assessment of how an illness, its complications, and its treatment are experienced by a patient. This review will examine prior work in HRQL in sickle cell disease and the rationale for utilizing HRQL as an outcome to measure impact of treatment. In addition, issues to consider when reporting HRQL will be presented.
authors.affiliation: Department of Pediatric Hematology/Oncology/Bone Marrow Transplant, Medical College of Wisconsin, Children's Research Institute of the Children's Hospital of Wisconsin, Milwaukee, Wisconsin, USA. jpanepin@mcw.edu
authors.forename: Julie A
authors.initials: JA
authors.lastname: Panepinto
mesh_terms: D000755:Anemia, Sickle Cell / Q000523:psychology*; D002648:Child; D006801:Humans; D015233:Models, Statistical; D011788:Quality of Life; D011795:Surveys and Questionnaires / Q000592:standards