H-FIT Background

The haemophilia treatment landscape has seen unprecedented diversification in recent years, moving from standard clotting factor concentrates (CFCs) to extended half-life CFCs, novel nonfactor hemostatic agents, and gene therapy. Patient-reported outcome measures, in particular health related quality of life (HRQoL), have become increasingly important in haemophilia research to evaluate the impact and efficacy of different treatments. The recognition of the importance of HRQoL in haemophilia research, and the challenges associated with measuring HRQoL in very young children led to the proposal of a different construct to assess HRQoL across the paediatric age span: the impact of haemophilia on the family.

The Haemophilia Family Impact Tool (H-FIT) was developed and validated in a multi-phased approach with parents of boys with haemophilia and haemophilia health-care providers across Canada (Dover et al., Res Pract Thromb Haemost, 2021). Items were generated through a series of seven focus groups at four paediatric haemophilia treatment centres (Halifax, Toronto, Ottawa, and Hamilton) and cognitive debriefing was conducted in Halifax and Toronto. The initial validation efforts suggest that the H-FIT is valid across the entire paediatric age span, with particular relevance for families with younger children. The H-FIT was able to differentiate between the parents of the youngest boys and the parents of the oldest boys, as well as parents of boys using extended half-life CFCs compared to standard half-life CFCs (Dover et al., Res Pract Thromb Haemost, 2021).

The H-FIT has been translated and culturally adapted into many different languages, and work is currently ongoing to assess the impact on families in the context of novel, nonfactor therapies.

1. Dover S, Young NL, Blanchette VS, Klaassen RJ, Chan AK, Wakefield C, Bouskill V, Carcao M, Belletrutti M, Bruce AA, Price VE. Measuring the impact of hemophilia on families: Development of the Hemophilia Family Impact Tool (H‐FIT). Research and practice in thrombosis and haemostasis. 2021 May;5(4):e12519.