Hemophilia A Bleeding Frequency and Its Impact on Specific Quality of Life Domains: A Pilot Study

Speaker(s)

Chiou SS1, Hlaing TS2, Chiu YC2, Yu YH2, Lai L3
1Division of Hematology and Oncology, Department of Pediatrics, Kaohsiung Medical University Hospital, Kaohsiung Medical University, KAOHSIUNG, KHH, Taiwan, 2Kaohsiung Medical University, Kaohsiung, Taiwan, 3Kaohsiung Medical University, Kaohsiung City, KHH, Taiwan

OBJECTIVES: Hemophilia A, a blood clotting disorder, significantly affects quality of life. The HaemoQOL questionnaire is a well-established tool specifically designed to assess hemophilia-related quality of life. However, a comprehensive understanding of how individual HaemoQOL domains are associated with bleeding frequency is crucial for optimizing management strategies. This study aims to investigate the association between bleeding frequency and individual Haemo-QoL domains in Hemophilia A patients.

METHODS: The study recruited 24 adults (≥18 years) with mild to severe Hemophilia A(without FVIII inhibitors) from a medical center in Taiwan (2023). Participants completed the Haemo-QoL questionnaire and reported their bleeding frequency. Kendall's Tau-b analysis assessed correlations between bleeding and individual Haemo-QoL domains. Hierarchical regression analysis was conducted to further examine these relationships while controlling for age, weight, and other potential confounders. Statistical significance was set at p < 0.05 (IBM-SPSS Statistics 20).

RESULTS: Patients with higher bleeding frequency had generally lower quality of life (higher Haemo-QoL scores), but no statistically significant correlations emerged between bleeding and specific Haemo-QoL domains. Further hierarchical regression analysis revealed that only the Physical Function domain of Haemo-QoL showed a significant association with bleeding frequency after adjusting for age, weight, medication type, and dose (p = 0.00, adjusted R-squared = 0.839).

CONCLUSIONS: This pilot study suggests that bleeding frequency might primarily impact the physical function domain of hemophilia-related quality of life. Future research with larger samples can confirm these findings and explore the influence of bleeding on other QoL aspects. This knowledge can inform the development of targeted interventions that address specific patient needs based on bleeding frequency and its impact on their quality of life.

Code

PCR131

Topic

Clinical Outcomes, Patient-Centered Research, Study Approaches

Topic Subcategory

Clinician Reported Outcomes, Patient-reported Outcomes & Quality of Life Outcomes, Prospective Observational Studies

Disease

Rare & Orphan Diseases