title: Health-related quality of life outcomes for patients with immune thrombocytopenic purpura.
abstract: Immune thrombocytopenic purpura (ITP) is a rare disease with infrequent serious bleeding making clinical trials difficult. One solution to this problem is to use alternative outcome measures such as health-related quality of life (HRQL). This review describes the various HRQL tools available to researchers including measures that are generic (applicable to many different disease types) and disease-specific measures developed explicitly for ITP specifically detailing the Kids' ITP Tools and the ITP-patient administered questionnaire. This review describes how incorporating HRQL tools such as these will allow researchers to move forward and do methodologically sound research.
authors.affiliation: Division of Hematology/Oncology, Department of Pediatrics, Children's Hospital of Eastern Ontario, 401 Smyth, Ottawa, ON, K1H 8L1, Canada, rklaassen@cheo.on.ca.
authors.forename: Robert J
authors.initials: RJ
authors.lastname: Klaassen
authors.forename: Nancy L
authors.initials: NL
authors.lastname: Young
mesh_terms: D006801:Humans; D017063:Outcome Assessment, Health Care / Q000379:methods; D016553:Purpura, Thrombocytopenic, Idiopathic / Q000523:psychology*; D011788:Quality of Life