Open AccessMeasuring the impact of hemophilia on families: Development of the Hemophilia Family Impact Tool (H‐FIT)
Author(s) -
Dover Saunya,
Young Nancy L.,
Blanchette Victor S.,
Klaassen Robert J.,
Chan Anthony K.,
Wakefield Cindy,
Bouskill Vanessa,
Carcao Manuel,
Belletrutti Mark,
Bruce Aisha A. K.,
Price Victoria E.
Publication year - 2021
Publication title -
research and practice in thrombosis and haemostasis
Language(s) - English
Resource type - Journals
ISSN - 2475-0379
DOI - 10.1002/rth2.12519
Subject(s) - medicine , context (archaeology) , quality of life (healthcare) , pediatrics , physical therapy , nursing , paleontology , biology
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; P < .0001) and a moderate correlation for parents of boys aged <7 years (r = 0.64; P = .0007). There was a significant difference between the mean H‐FIT scores for parents of boys using extended half‐life factor (68.1; standard deviation [SD]=14.2) compared to standard half‐life factor (54.7; SD=18.4; P = .04). 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.