title: Health-related quality of life in sickle cell disease: past, present, and future.
abstract: Health-related quality of life (HRQL) is defined as the patient's appraisal of how his/her well being and level of functioning, compared to the perceived ideal, are affected by individual health. The study of HRQL in children and adults with sickle cell disease (SCD) has begun to flourish. Given the devastating complications of the disease and other co-morbid factors patients experience that influence HRQL, it is increasingly important to understand HRQL. The focus of this critical review was to examine past and current research in HRQL in SCD where a validated instrument was used. In addition, future directions for HRQL in SCD are explored.
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, Wisconsin, USA. jpanepin@mcw.edu
authors.forename: Julie A
authors.initials: JA
authors.lastname: Panepinto
authors.forename: Melanie
authors.initials: M
authors.lastname: Bonner
mesh_terms: D000328:Adult; D000755:Anemia, Sickle Cell / Q000628:therapy*; D002648:Child; D006304:Health Status; D006801:Humans; D011788:Quality of Life