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Maintaining a high haemophilia carrier quality of life requires recognizing that many women with the haemophilia gene suffer from undiagnosed bleeding symptoms. Traditionally, medical science viewed carriers as asymptomatic individuals who merely transmitted the disorder to their male offspring. However, emerging research now reveals that these women often face significant physical and emotional challenges. A recent Colombian study specifically evaluated the health-related quality of life (HRQoL) in obligate carriers of haemophilia compared to non-carriers.
The study enrolled 104 women, split equally between obligate carriers and a matched control group. Researchers utilized the ISTH-Bleeding Assessment Tool (ISTH-BAT) and the SF-36 questionnaire to measure outcomes. Notably, 75% of the carriers reported abnormal bleeding symptoms, whereas only 1.92% of the non-carriers had similar issues. Consequently, the carriers demonstrated significantly lower scores in the Physical Component Summary (PCS) of the HRQoL assessment. This physical decline often stems from frequent bruising, heavy menstrual bleeding, and musculoskeletal pain, which are frequently overlooked during routine clinical visits.
Interestingly, while the physical scores were lower among carriers, the mental component scores remained similar to those of non-carriers. This suggests that the primary burden on haemophilia carrier quality of life is physiological rather than psychological. Furthermore, the researchers found that increased age, higher BMI, and higher bleeding scores negatively correlated with physical quality of life. Specifically, bruising and menorrhagia were the most prevalent symptoms reported by the carrier group. Therefore, healthcare providers must adopt more rigorous screening protocols to identify symptomatic carriers early and provide tailored management strategies.
Moreover, the study highlighted that non-carriers often had higher educational levels and higher employment rates compared to carriers. These socioeconomic factors, combined with the physical burden of bleeding, create a complex landscape for patient care. In addition, recognizing the symptoms of "symptomatic carriers"—as per the latest ISTH nomenclature—is essential for improving long-term health outcomes. Clinicians should prioritize regular monitoring of factor levels and bleeding phenotypes to ensure these women receive the support they need to maintain their daily activities and overall well-being.
Carriers often experience a reduced physical quality of life due to chronic bleeding symptoms such as heavy periods, easy bruising, and joint pain. These symptoms can limit daily activities and physical functioning.
Heavy menstrual bleeding (menorrhagia) and easy bruising are the most frequently reported symptoms. These issues significantly contribute to a lower physical health-related quality of life score.
No, not all carriers are symptomatic. However, recent studies suggest that a large majority (up to 75% in some populations) experience abnormal bleeding that may require medical attention or monitoring.
Disclaimer: This content is for informational and educational purposes only. It does not constitute medical advice or establish a doctor-patient relationship. Refer to the latest local and national guidelines for clinical practice.
References
1. Manzano-Di Zeo FA et al. Health-Related Quality of Life Among Female Carriers of Haemophilia and Non-Carriers in a Colombian Population. Haemophilia. 2026 May 13. doi: 10.1111/hae.70282. PMID: 42125852.
2. World Federation of Hemophilia. Guidelines for the Management of Hemophilia, 3rd edition. Haemophilia. 2020;26(Suppl 6):1-158.
3. Srivastava A et al. WFH Guidelines for the Management of Hemophilia. Haemophilia. 2020;26(Suppl 6):1-158. doi: 10.1111/hae.14046.
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Research shows that 75% of female haemophilia carriers experience abnormal bleeding, significantly reducing their physical health-related quality of life....
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