title: Development of a disease-specific quality of life questionnaire for children & adolescents with idiopathic thrombocytopenic purpura (ITP-QoL).
abstract: Quality of life (QoL) assessment in children with coagulation disorders is a relatively unstudied area. While hemophilia-specific questionnaires (such as Haemo-QoL) are available, no instrument for children with idiopathic thrombocytopenic purpura (ITP) has been validated yet. A disease-specific questionnaire for children with ITP was therefore developed (ITP-QoL) in three phases: (a) a preparatory phase; (b) a developmental phase; (c) a pilot testing phase. Since dimensions of Haemo-QoL were considered important for children with ITP, items were adapted, reformulated and additional dimensions were included. Two age-group versions were designed for children (aged 3-7, 8-18 years) and parents in Italian, German, and Swedish languages and were pilot tested.
authors.affiliation: Institute and Policlinics for Medical Psychology, University Medical Centre, Hamburg, Germany, and Department of Clinical Sciences Malmö, Research Unit for Pediatric Hematology, University Hospital Malmö, Sweden. s.mackensen@uke.uni-hamburg.de
authors.forename: S
authors.initials: S
authors.lastname: von Mackensen
authors.forename: C
authors.initials: C
authors.lastname: Nilsson
authors.forename: M
authors.initials: M
authors.lastname: Jankovic
authors.forename: N
authors.initials: N
authors.lastname: Mirra
authors.forename: E
authors.initials: E
authors.lastname: D'Angelo
authors.forename: A
authors.initials: A
authors.lastname: Borkhardt
authors.forename: R
authors.initials: R
authors.lastname: Ljung
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D005858:Germany; D006801:Humans; D007558:Italy; D010865:Pilot Projects; D011594:Psychometrics / Q000295:instrumentation*; D016553:Purpura, Thrombocytopenic, Idiopathic / Q000175:diagnosis / Q000503:physiopathology / Q000523:psychology*; D011788:Quality of Life; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires / Q000592:standards*; D013548:Sweden