Development and testing of an instrument to assess the Quality of Life of Children with Haemophilia in Europe (Haemo‐QoL)

Abstract

Summary. In spite of an increased interest in the assessment of quality of life (QoL) in children, so far no instrument for children with haemophilia is available. Because of the low prevalence of the condition, such an instrument should also be cross‐culturally applicable. In the study presented, a (QoL) assessment instrument for children with haemophilia (the Haemo‐QoL questionnaire) was developed and tested in six countries (France, Germany, Italy, the Netherlands, Spain and the United Kingdom) for psychometric properties in 339 children with haemophilia and their parents. The Haemo‐QoL is a self‐reported questionnaire for children in the age ranges 4–7 (I: 21 items), 8–12 (II: 64 items), 13–16 years (III: 77 items) as well as for parent rating containing 9–11 subscales (depending on age‐group versions). Psychometric testing involved the examination of reliability and validity. The three age‐group versions of the Haemo‐QoL had acceptable internal consistency and retest reliability values, as well as possessing sufficient discriminant and convergent validity. However, in young children when compared to older children, these indicators were less satisfactory. The Haemo‐QoL full version is now available for children of three age groups and their parents and is ready for use in clinical research (http://www.haemoqol.org).