HAEMOcare: The First International Epidemiological Study Measuring Burden of Hemophilia in Developing Countries

Naresh Gupta; Abderrahmane Benbouzid; Meriem Belhani; Mohammed El Andaloussi; Khadija Maani; Yasser Wali; Soraya Benchikh El Fegoun; Hossam Ali Saad; Johnny Mahlangu

doi:10.1055/s-0039-1688414

TH Open, Inhaltsverzeichnis

CC BY 4.0 · TH Open 2019; 03(02): e190-e199
DOI: 10.1055/s-0039-1688414

Original Article

Georg Thieme Verlag KG Stuttgart · New York

HAEMOcare: The First International Epidemiological Study Measuring Burden of Hemophilia in Developing Countries

Naresh Gupta

¹Department of Medicine and The Haemophilia Centre, Maulana Azad Medical College & Associated Lok Nayak and GB Pant Hospitals, New Delhi, India

,

Abderrahmane Benbouzid

²Department of Orthopaedics, University Medical Centre of Ben Aknoun, Ben Aknoun, Algeria

,

Meriem Belhani

³Department of Haematology, University Hospital of Beni Messous, Beni Messous, Algeria

,

Mohammed El Andaloussi

⁴Paediatric Orthopaedic and Traumatology Service, Abderrahim Harouchi Hospital, Part of the Ibn Rochd University Hospital, Casablanca, Morocco

,

Khadija Maani

⁵Department of Paediatrics, Haematology and Oncology Unit, Abderrahim Harouchi University Children's Hospital–Medical School of Casablanca, Casablanca, Morocco

,

Yasser Wali

⁶Department of Child Health, Sultan Qaboos University, Muscat, Oman

⁷Department of Paediatrics, Alexandria University, Alexandria, Egypt

,

Soraya Benchikh El Fegoun

⁸Novo Nordisk Health Care AG, Zurich, Switzerland

,

Hossam Ali Saad

⁹Novo Nordisk Inc., Plainsboro, New Jersey, United States

,

Johnny Mahlangu

¹⁰Haemophilia Comprehensive Care Centre, Charlotte Maxeke Johannesburg Hospital, Department of Molecular Medicine and Haematology, National Health Laboratory Service and Faculty of the Health Sciences, University of Witwatersrand, Johannesburg, South Africa

› Institutsangaben

Abstract

Introduction Optimizing hemophilia care remains challenging in developing countries. Burden-of-disease studies are important to develop strategies for improving hemophilia care.

Aim The HAEMOcare study evaluated the factors contributing to hemophilia-related orthopedic disease burden in developing countries.

Methods HAEMOcare was a noninterventional, cross-sectional, epidemiological study conducted in Algeria, India, Morocco, Oman, and South Africa. Male patients with severe hemophilia (N = 282) aged ≥6 years, without or with inhibitors, being treated on-demand for bleeding were included. Hemophilia-related orthopedic clinical and functional status was assessed using the Hemophilia Joint Health Score (HJHS), radiological status with the Pettersson Score, and quality of life with the EuroQol five-dimension questionnaire (EQ-5D-3L). Direct and indirect economic costs of hemophilia care were also calculated.

Results Patients (mean [standard deviation, SD] age: 20.8 [10.6] years) experienced a mean annualized bleeding rate of 25.8. Overall mean (SD) HJHS and Pettersson score were 17.9 (12.8) and 15.0 (13.5), respectively; scores were similar between patients without or with inhibitors (p = 0.21 and 0.76, respectively). Approximately 70% of adults reported problems relating to pain/discomfort and mobility parameters in the EQ-5D-3L. Mean distance to a hemophilia treatment center (HTC) was 79.4 km. As expected, total costs of hemophilia were statistically significantly higher in patients with inhibitors versus without inhibitors (p = 0.002).

Conclusion Inadequate access to HTCs and expert care, along with high bleeding rates, led to equivalent hemophilia-related orthopedic morbidity between hemophilia patients without and with inhibitors. HAEMOcare documented the economic and disease burdens associated with suboptimal hemophilia care in developing countries.

Keywords

HAEMOcare - epidemiological study - hemophilia - inhibitors - orthopedic status - quality of life - developing countries

Volltext

Referenzen

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