Parents’ perception of quality of life in their sons with haemophilia

Abstract

Aim: Quality of life (QOL) in haemophilia involves both physical and psychological issues. This study was performed to determine parents’ perceptions of the QOL of their sons with haemophilia and compare this to their children's own assessment. Methods: In this study, we used the Haemo-QoL questionnaire for haemophilia, to compare the responses of 22 parents to the responses of their children within the age groups 4–7, 8–12 and 13–16 and also for the severity groups mild versus moderate–severe. Results: In the 4–7 age group, the children considered their QOL to be less than that estimated by their parents for a number of areas, while in the 8–12 age group the parents considered the QOL for their children to be lower than that estimated by the children themselves. In the 13–16 age group, there was almost universal agreement on QOL between the children and their parents apart from the subscale of school and sport (P = 0.04). Within the severity groupings, there was much more concordance between the parents and children. The only significant difference between parents and children was for physical health in the mild group (P = 0.03). In the moderate–severe groups, no results were significant, however, five of the subscales showed borderline significant (P < 0.1) results. Conclusions: Parental perceptions of QOL of their sons changes with the age of the child and the severity of the haemophilia. These perceptions need to be taken into account when developing an overall care strategy involving both the child and parent.