The impact of a haemophilia education intervention on the knowledge and health related quality of life of parents of Indian children with haemophilia.

INTRODUCTION: The impact of haemophilia education on the quality of life of parents of children with haemophilia from low income settings has not been studied.

AIM: The purpose of this study was to determine the impact of an education intervention on health related quality of life (HRQOL) of parents of children with haemophilia, parent's knowledge about haemophilia and its management, and to determine whether education about haemophilia can positively impact these outcomes.

METHODS: One hundred thirty-three parents from across Maharashtra state, India were provided information about haemophilia, care of child and self-care. The impact of the intervention was measured as changes occurring from baseline to 6 months and 1 year after intervention. Knowledge and practice of management of bleeding was measured using pretested structured questionnaires. HRQOL was measured using a validated Peds Quality of Life(™) Family Impact Module (PedsQL(™) FIM) tool.

RESULTS: There was improvement in knowledge scores immediately after intervention, which remained significantly higher than baseline 1 year after intervention. HRQOL showed significant improvement at 6 months but reduced to baseline levels 1 year after intervention. There were statistically significant changes in terms of practice of management of bleeding episodes at 6 months and 1 year after intervention.

CONCLUSION: Education about haemophilia resulted in improvement of knowledge, and practice of management of bleeding which was retained till a year after the intervention. However, a long-term effect on the HRQOL of parents could not be observed after administration of a single education intervention.