Hughes, Thomas Brok-Kristensen, Mikkel Gargeya, Yosha Worsøe Lottrup, Anne Mette Bo Larsen, Ask Torres-Ortuño, Ana Mackett, Nicki Stevens, John
Published in
The Journal of Haemophilia Practice
Background Recent treatment option advances in haemophilia care have contributed to a discourse of ‘normality’ around the condition, in which people with haemophilia (PwH) are increasingly expected to live ‘normal’ lives unburdened by their condition. Aim The aim of this article is to explore notions of ‘normality’ in the experience of haemophilia ...
Hughes, Thomas Brok-Kristensen, Mikkel Gargeya, Yosha Worsøe Lottrup, Anne Mette Bo Larsen, Ask Torres-Ortuño, Ana Mackett, Nicki Stevens, John
Published in
The Journal of Haemophilia Practice
Background With the major advances in treatment of haemophilia in recent decades, people with haemophilia (PwH) are more protected in their daily lives than ever before. However, recent studies point to persisting or increasing patient experience of uncertainty. Aims The aim of this article is to further investigate findings related to how PwH unde...
Hughes, Thomas Brok-Kristensen, Mikkel Gargeya, Yosha Worsøe Lottrup, Anne Mette Bo Larsen, Ask Torres-Ortuño, Ana Mackett, Nicki Stevens, John
Published in
The Journal of Haemophilia Practice
Background Recent improvements in approaches to treatment have opened a window of opportunity to redefine and expand the goals of treatment in haemophilia This article explores treatment culture in light of these improvements and its potential impact on the range of possibilitis in the lived experience of haemophilia. Aims The aim of this article i...
Mulders, Greta Uitslager, Nanda Alavian, Sharon Wareing, Anne Stein Oldenburg, Kathi
Published in
The Journal of Haemophilia Practice
Introduction Switching between clotting factor products is becoming increasingly common as product choice increases and financial pressure grows to choose the most cost-effective options. Guidance on carrying out the switch recommends a complex and long process that may benefit from being defined in a protocol. Haemophilia nurses may be responsible...
van Overbeeke, Eline; 97132; Michelsen, Sissel; Hauber, Brett; Peerlinck, Kathelijne; 17416; Hermans, Cedric; Lambert, Catherine; Goldman, Michel; Simoens, Steven; Huys, Isabelle;
INTRODUCTION: Exploring patient perceptions regarding gene therapies may provide insights about their acceptability to patients. OBJECTIVE: To investigate opinions of people with haemophilia (PWH) regarding gene therapies. Moreover, this study aimed to identify patient-relevant attributes (treatment features) that influence PWH's treatment choices....
Duncan, Natalie A Kronenberger, William G Roberson, Christopher P Janson, Isaac A Shapiro, Amy D
Published in
Haemophilia : the official journal of the World Federation of Hemophilia
Bloomberg, M. Sargenton, K. Gattamorta, K. Anglade, D.
Published in
The Journal of Haemophilia Practice
Factor replacement is currently the standard of care to prevent or treat bleeding episodes in haemophilia patients. This study examined current prescribing practices of factor therapy for patients at haemophilia treatment centres (HTCs) in the United States. Aims The aims were to evaluate the driving forces for prescribing factor products, to evalu...
Badulescu, Oana Viola Filip, Nina Sirbu, Paul Dan Bararu-Bojan, Iris Vladeanu, Maria Bojan, Andrei Ciocoiu, Manuela
Published in
Experimental and Therapeutic Medicine
Haemophilia is an inherited disease that requires a different approach in order to evaluate, monitor and treat patients. Despite the great advances in therapeutic agents that have emerged, reports on the impact of monitoring outcomes on treatment decisions are rarely presented. Haemophilia A and haemophilia B are inherited bleeding disorders caused...
Wang, Jiaan-Der Lin, Ching-Yeh Weng, Te-Fu Chiou, Shyh-Shin Peng, Ching-Tien Shen, Ming-Ching
Published in
Haemophilia : the official journal of the World Federation of Hemophilia
Feng, Bin Li, Zeng Feng, Cheng Zeng, Ang Gao, Peng Liu, Yong Weng, Xisheng
Published in
Haemophilia : the official journal of the World Federation of Hemophilia
The characteristics of the haemophilia may endanger the patient with haemophilia (PWH) to higher ratio of wound complication, even lead to the refractory wound problem. The early wound complication in PWH has not been well studied in literature. Between the period from 2002 to 2018, 250 patients underwent 323 elective orthopaedic surgical procedure...
