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Vol. 46. Núm. S4.
HEMO 2024
Páginas S569-S570 (outubro 2024)
Vol. 46. Núm. S4.
HEMO 2024
Páginas S569-S570 (outubro 2024)
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TREATMENT SATISFACTION AND JOINT HEALTH OUTCOMES WITHIN A REAL-WORLD HAEMOPHILIA B POPULATION: THE ADELPHI DISEASE SPECIFIC PROGRAMMESURVEY
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V Jiméne-ZYustea, C Percierb, T Porstmannb, N Ballc, G Castamand, GG Fabbrone, MGA Okumae
a Hospital Universitario La Paz-IdiPaz; Servicio de Hematología, Autonoma University, Madrid, Spain
b Novo Nordisk, Zürich, Switzerland
c Adelphi Real World, Bollington, United Kingdom
d Center for Bleeding Disorders and Coagulation, Careggi University Hospital, Florence, Italy
e Novo Nordisk Farmacêutica do Brasil Ltda, São Paulo, SP, Brazil
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Vol. 46. Núm S4

HEMO 2024

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Background

While haemophilia care continues to improve, People with Haemophilia B (PwHB) may still experience disease and treatment burden. Aims: To describe physician-reported treatment satisfaction and joint health outcomes in a real-world population of PwHB.

Methods

The Adelphi Real World haemophilia Disease Specific Programme™is a retrospective, cross-sectional survey gathering data on treatment satisfaction and joint health via physician-completed patient record forms. Data were obtained from France, Germany, India, Italy, Japan, Spain, the UK and USA. Physician inclusion criteria were: (1) Haematology or haematology-oncology specialist; (2) treats ≥5 patients with haemophilia A/B per month. PwHB inclusion criteria were: (1) males with moderate-to-severe HB; (2) Receiving Extended Half-Life (EHL) or Standard Half-Life (SHL) therapy prophylactically.

Results

In this interim analysis, 85 physicians provided data on 232 PwHB receiving prophylaxis with EHL (n = 199 [86%]) or SHL therapy (n = 33 [14%]). Demographics were similar between the two treatment groups, although a greater proportion of people with severe HB received EHL therapy. Physicians reported that 84% of PwHB receiving EHL and 73% receiving SHL therapy were fully compliant (received > 80% of prescribed dose). Physicians were not completely satisfied with the current treatment for 57% of patients receiving EHL and 70% receiving SHL therapy, for reasons including treatment schedules and lack of effectiveness for specific bleed types. Physicians reported 42% (n = 83/199) of PwHB receiving EHL and 36% (n = 12/33) receiving SHL therapy had joint problems due to haemophilia. In the overall PwHB group, physicians reported that 28% (n = 64) had problems in ≥ 1 target joint and 36% (n = 83) had joint pain.

Conclusion

Although physicians reported good adherence to therapy among PwHB, most were not completely satisfied with treatment outcomes, and reported joint problems for more than one-third of PwHB. With this evaluation revealing scope for improvement, future analysis will provide detail regarding treatment satisfaction from the patients'perspective.

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Idiomas
Hematology, Transfusion and Cell Therapy
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