Franco J-S, Torres L, Peñuela O, Forero MDR, Rivera M, Vizcaya D. Exploring the Quality Of Life And Self‐Reported Outcomes Of Patients With Hemophilia A In A Cross‐Sectional Study In Colombia. Abstract 110. Haemophilia, 2021;27(S2):18-181. https://doi.org/10.1111/hae.14236
Introduction
Collecting and interpreting patient‐reported outcomes in Hemophilia A supports the understanding of patients’ perspec‐tives on the burden of their disease and its treatment to improve their comprehensive care. However, in Colombia, this information is limited.
Methods
Cross‐sectional study conducted in the context of a he‐mophilia educational bootcamp held November 29 to December 1, 2019 in Medellin, Colombia. The bootcamp was organized by a hemo‐philia patient organization (Liga Antioqueña de Hemofilia) responsible for contacting and inviting patients with Hemophilia A (PwHA), inde‐pendently of their treatment. The objective of this 3‐day bootcamp was to obtain information on patient’s health beliefs, treatment ex‐perience, and Health‐Related Quality of Life (HRQoL) through focus groups, individual interviews and the Patient Reported Outcomes Burdens and Experiences (PROBE) questionnaire that includes the EuroQol five‐dimension (EQ‐5D‐5L).
Results
A total of 25 moderate or severe PwHA (age range 10‐59 yrs) were enrolled in the study and completed the PROBE questionnaire. Acute pain was the most frequently reported symptom (80%) with 88% of the patients reporting use of pain medication. Chronic pain was reported by 55%. Difficulty with activities of daily living was reported by 48% and 32% reported requiring use of mobility aids or assistive devices. Furthermore, 28% of the patients have been told they have clinically significant inhibitors, 52% reported having more than 2 spontaneous bleeding events in the past 12 months and 76% of the patients reported target joints. Treatment was administered at home in 72% of patients, with regular prophylaxis as the most common treatment regimen. In terms of overall HRQoL, measured by EQ‐5D VAS, the mean score reported by the patients was 82.7 (SD 14.6), reporting worse health state in the EQ‐5D‐5L dimensions of pain/discomfort (24% moderate and 4% severe problems) and usual activities (16% moderate problems).
Discussion/Conclusion
Patients with Hemophilia A in Colombia still suffer from the complications of the disease related with bleeding events, mainly pain and disability affecting their HRQoL, which high‐lights the need of developing patient‐centered initiatives to improve the health of this population. Further efforts are required to ensure an appropriate prophylaxis treatment regimen among patients.
Disclosure of Interest
J.‐S. Franco Employee of: Bayer S.A. Colombia, L. Torres Employee of: Bayer S.A. Colombia, O. Peñuela Employee of: Bayer S.A. Colombia, M. D. R. Forero Employee of: Bayer S.A. Colombia, M. Rivera Employee of: Bayer Hispania, Spain, D. Vizcaya Employee of: Bayer Hispania, Spain.
View Presentation: EAHAD21-ABS-1393
