Challenges and knowledge gaps facing hemophilia carriers today: Perspectives from patients and health care providers

Res Pract Thromb Haemost. 2022 Sep 20;6(6):e12783. doi: 10.1002/rth2.12783. eCollection 2022 Aug.ABSTRACTBACKGROUND: Hemophilia carriers experience abnormal bleeding symptoms; however, a lack of awareness about this topic coupled with additional knowledge gaps and barriers leads to suboptimal care for this population.OBJECTIVE: The primary objective was to describe the current knowledge gaps and challenges from the perspective of both hemophilia carriers and their health care providers.METHODS: We carried out a mixed methods descriptive study with two population groups between September and December 2020. The hemophilia carrier perspective was obtained through both focus groups and questionnaires, whereas the health care providers perspective obtained via questionnaire sent to the Association of Hemophilia Care Directors of Canada and the Canadian Association of Nurses in Hemophilia Care. Focus groups were analyzed using descriptive thematic analysis and quantitative survey data was also analyzed.RESULTS: Eleven hemophilia carriers participated along with 19 health care providers (11 physicians, eight nurses). Hemophilia carrier focus group discussions identified four areas representing major challenges or knowledge gaps: (1) negative psychosocial impacts; (2) difficulty determining symptom significance; (3) need for self-advocacy; (4) testing concerns. Survey results from both groups were aligned with the most important topics for ongoing education identified as information ...
Source: Thrombosis and Haemostasis - Category: Hematology Authors: Source Type: research