Pilot testing of the 'Haemo-QoL' quality of life questionnaire for haemophiliac children in six European countries.

摘要: Summary.  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. co-operation treatment centres six European countries, approximately 10 per country were asked participate the pilot-testing. Both self-reported parent-reported questionnaires provided for two age-groups children (4–16 years). Medical data was collected from physicians patient files. Answers open questions participants (58 57 parents) confirmed content 116 preliminary items. Cognitive debriefing revealed that majority Haemo-QoL rated favourably, but 29 recommended be omitted several items reformulated. Preliminary psychometric testing revised 77 item questionnaire same sample showed acceptable reliability validity, which will examined subsequent study larger sample.