title: Pilot testing of the 'Haemo-QoL' quality of life questionnaire for haemophiliac children in six European countries.
abstract: In a multinational working group, an instrument (Haemo-QoL) to assess quality of life in children/adolescents with haemophilia and their parents has been developed. In co-operation with haemophilia treatment centres in six European countries, approximately 10 children/adolescents with haemophilia per country and their parents were asked to participate in the pilot-testing. Both self-reported and parent-reported questionnaires were provided for two age-groups of children (4-16 years). Medical data was collected from physicians from patient files. Answers to open questions from participants (58 children and 57 parents) confirmed the content of 116 of the preliminary items. Cognitive debriefing revealed that the majority of the Haemo-QoL was rated favourably, but 29 questions were recommended to be omitted and several items to be reformulated. Preliminary psychometric testing of the revised 77 item questionnaire in the same sample showed acceptable reliability and validity, which will be examined in a subsequent study with a larger patient sample.
authors.affiliation: Department of Medical Psychology, University of Hamburg, Institute for Medical Psychology, University of Munich, Germany. bullinger@uke.uni-hamburg.de
authors.forename: M
authors.initials: M
authors.lastname: Bullinger
authors.forename: S
authors.initials: S
authors.lastname: von Mackensen
authors.forename: K
authors.initials: K
authors.lastname: Fischer
authors.forename: K
authors.initials: K
authors.lastname: Khair
authors.forename: C
authors.initials: C
authors.lastname: Petersen
authors.forename: U
authors.initials: U
authors.lastname: Ravens-Sieberer
authors.forename: A
authors.initials: A
authors.lastname: Rocino
authors.forename: P
authors.initials: P
authors.lastname: Sagnier
authors.forename: J M
authors.initials: JM
authors.lastname: Tusell
authors.forename: M
authors.initials: M
authors.lastname: van den Berg
authors.forename: M
authors.initials: M
authors.lastname: Vicariot
mesh_terms: D000293:Adolescent; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D005246:Feedback; D006467:Hemophilia A / Q000523:psychology*; D006801:Humans; D010865:Pilot Projects; D011594:Psychometrics; D011788:Quality of Life; D011795:Surveys and Questionnaires / Q000592:standards*