Development of a disease-specific quality of life questionnaire for children & adolescents with idiopathic thrombocytopenic purpura (ITP-QoL)

S. Von Mackensen, C. Nilsson, M. Jankovic, N. Mirra, E. D'Angelo, A. Borkhardt, R. Ljung

Research output: Contribution to journalArticle

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.

Original languageEnglish
Pages (from-to)688-691
Number of pages4
JournalPediatric Blood and Cancer
Volume47
Issue number5 SUPPL.
DOIs
Publication statusPublished - Oct 15 2006

Keywords

  • Children
  • ITP
  • Quality of life

ASJC Scopus subject areas

  • Cancer Research
  • Pediatrics, Perinatology, and Child Health
  • Hematology

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