To measure the impact of hemophilia on families, researchers have developed and validated a novel tool, the Hemophilia Family Impact Tool (H-FIT). Details of the H-FIT were reported in Research and Practice in Thrombosis Haemostasis.
The tool was developed based on 7 focus groups that were conducted with parents of boys with hemophilia and hemophilia health care providers at 4 Canadian hemophilia treatment centers. During a review of the relevance of each item in the Pediatric Quality of Life Family Impact Module (PedsQL-FIM), themes specific to hemophilia but not covered by the PedsQL-FIM arose, including treatment administration/burden of administration, guilt/worry around functional limitations, symptom-specific concerns, and knowledge/confidence about hemophilia.
The H-FIT questionnaire was developed based upon the core themes expressed and the proposed wording of the items in the new tool reviewed by an expert panel. In the H-FIT, a lower score mean a higher impact of hemophilia on the family.
H-FIT was validated in a sample of 54 caregivers of boys with hemophilia relative to the PedsQL-FIM. The caregivers were predominantly mothers (74%) and fathers (20.4%). The pediatric patients had a median age of 7 years (range, 0.83-17). Most had severe (66.7%) or moderate (11.1%) hemophilia, were on prophylaxis (85%), and were being treated with extended half-life clotting factor concentrates (CFCs; 67%).
Across all age groups, the H-FIT was strongly correlated with the PedsQL-FIM (r = 0.79; P <.0001). The correlation was moderate for parents of boys aged <7 years (r = 0.64; P =.0007) and strong for parents of boys aged ≥7 years (r = 0.86; P <.0001). Significant differences were observed between the mean score for the <4 and 13 to 17 age group (56.2 vs 71.8; P =.04), indicating that the impact of hemophilia on the family decreases with age. There was also a significant difference the mean H-FIT scores for parents of boys using extended half-life factor compared to standard half-life factor (68.1 vs 54.7; P =.04), regardless of the age of the child, indicating the H-FIT may be responsive to changes in therapy (burden of administration).
“The preliminary measurement properties show that the H-FIT is valid for the entire pediatric age span, with particular relevance for parents of boys who are aged <4 years,” the authors wrote. “Future work should seek to confirm the responsiveness of the H-FIT to changes in therapy, including nonfactor hemostatic therapies, and to adapt the H-FIT for use in different populations globally.”
Disclosure: Authors declared affiliations with industry. Please refer to the original publication for a full list of disclosures. Funding for this study was provided by
Sanofi-Genzyme. The funder did not have any role in study design, data collection, analysis, or preparation of the manuscript.
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):e12519. doi:10.1002/rth2.12519