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Dover S, Young NL, Blanchette VS, et al. Measuring the impact of hemophilia on families: Development of the Hemophilia Family Impact Tool (H-FIT). Res Pract Thromb Haemost. 2021;5(4):e12519doi: 10.1002/rth2.12519.
Dover, S., Young, N. L., Blanchette, V. S., Klaassen, R. J., Chan, A. K., Wakefield, C., Bouskill, V., Carcao, M., Belletrutti, M., Bruce, A. A. K., & Price, V. E. (2021). Measuring the impact of hemophilia on families: Development of the Hemophilia Family Impact Tool (H-FIT). Research and practice in thrombosis and haemostasis, 5(4), e12519. https://doi.org/10.1002/rth2.12519
Dover, Saunya, et al. "Measuring the impact of hemophilia on families: Development of the Hemophilia Family Impact Tool (H-FIT)." Research and practice in thrombosis and haemostasis vol. 5,4 (2021): e12519. doi: https://doi.org/10.1002/rth2.12519
Dover S, Young NL, Blanchette VS, Klaassen RJ, Chan AK, Wakefield C, Bouskill V, Carcao M, Belletrutti M, Bruce AAK, Price VE. Measuring the impact of hemophilia on families: Development of the Hemophilia Family Impact Tool (H-FIT). Res Pract Thromb Haemost. 2021 May 07;5(4):e12519. doi: 10.1002/rth2.12519. eCollection 2021 May. PMID: 34013152; PMCID: PMC8114030.
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Res Pract Thromb Haemost. 2021 May 07;5(4):e12519. doi: 10.1002/rth2.12519. eCollection 2021 May.

Measuring the impact of hemophilia on families: Development of the Hemophilia Family Impact Tool (H-FIT).

Research and practice in thrombosis and haemostasis

Saunya Dover, Nancy L Young, Victor S Blanchette, Robert J Klaassen, Anthony K Chan, Cindy Wakefield, Vanessa Bouskill, Manuel Carcao, Mark Belletrutti, Aisha A K Bruce, Victoria E Price

Affiliations

  1. Child Health Evaluative Sciences The Hospital for Sick Children Research Institute Toronto ON Canada.
  2. School of Rural and Northern Health Laurentian University Sudbury ON Canada.
  3. Division of Hematology/Oncology The Hospital for Sick Children Toronto ON Canada.
  4. Department of Pediatrics University of Toronto Toronto ON Canada.
  5. Division of Pediatric Hematology/Oncology University of Ottawa Children's Hospital of Eastern Ontario Ottawa ON Canada.
  6. Department of Pediatrics McMaster Children's Hospital McMaster University Hamilton ON Canada.
  7. Department of Nursing The Hospital for Sick Children Toronto ON Canada.
  8. Pediatric Hematology Department of Pediatrics University of Alberta Edmonton AB Canada.
  9. Division of Pediatric Hematology/Oncology Department of Pediatrics IWK Health Centre Dalhousie University Halifax NS Canada.

PMID: 34013152 PMCID: PMC8114030 DOI: 10.1002/rth2.12519

Abstract

INTRODUCTION: This study aimed to assess the impact of hemophilia on families, in the context of current and emerging hemostatic therapies, and explore the need for a hemophilia-specific tool targeted at parents of boys aged <4 years. A secondary aim was to develop and validate the new tool.

METHODS: Focus groups were conducted with parents of boys with hemophilia and hemophilia health care providers at Canadian hemophilia treatment centers (HTCs) to review the relevance of the Pediatric Quality of Life Family Impact Module (PedsQL-FIM); a novel questionnaire was developed by identifying core themes expressed. This questionnaire, the Hemophilia Family Impact Tool (H-FIT) was validated in a sample of parents of boys with hemophilia relative to the PedsQL-FIM.

RESULTS: Seven focus groups were conducted at four HTCs, generating themes specific to hemophilia not covered by the PedsQL-FIM, suggesting that a new tool be developed (the H-FIT). In the validation phase, 54 parents completed the H-FIT and PedsQL-FIM. The H-FIT had a strong correlation with the PedsQL-FIM across all ages (r = 0.79;

CONCLUSION: A novel, disease-specific tool, the H-FIT, has been developed to measure the impact of hemophilia on families. The H-FIT has good preliminary measurement properties and may be responsive to changes in therapy associated with a decreased burden of administration.

© 2021 The Authors. Research and Practice in Thrombosis and Haemostasis published by Wiley Periodicals LLC on behalf of International Society on Thrombosis and Haemostasis (ISTH).

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