Health-Related Quality of Life Among Female Carriers of Haemophilia and Non-Carriers in a Colombian Population.

INTRODUCTION

Women with haemophilia can present manifestations and experience undiagnosed symptoms, which negatively affect their health-related quality of life (HRQoL).

OBJECTIVE

To evaluate the HRQoL in obligate carriers of haemophilia (OCH) versus women non-carriers of haemophilia (WNCH) in a Colombian population.

METHODS

Observational, cross-sectional study of women over 18 years. OCH were defined as daughters of a father with haemophilia, mothers of two or more sons with haemophilia, or mothers of one son with haemophilia and another affected relative. OCH were matched 1:1 with WNCH according to socioeconomic stratum and age. Women with other haematological pathologies, use of anticoagulants or antiplatelets, pregnancy or cognitive impairment were excluded. The Bleeding Assessment Tool (ISTH-BAT) was used to evaluate bleeding symptoms, and the SF-36 questionnaire was used to measure HRQoL.

RESULTS

A total of 104 women were included (52 OCH and 52 WNCH), with a median age of 49 years (IQR 40.5-48.5). WNCH had higher educational levels and a lower proportion of homemakers (23.8% vs. 46.15%; p = 0.015). A total of 38.46% had abnormal bleeding (ISTH-BAT ≥ 6), which was more frequent in OCH (75% vs. 1.92%; p < 0.01), with menorrhagia being the most prevalent manifestation (90.38% vs. 44.23%; p < 0.01). OCH reported lower scores in all of the SF-36 domains, with greater involvement in physical role (65.38%), while the WNCH reported a lower score in mental health (17.31%).

CONCLUSION

Compared with WNCH, OCH have a significantly more compromised HRQoL, which highlights the need for specific interventions to improve their physical and psychosocial well-being.