Published in The Journal of Haemophilia Practice
BackgroundDisease-specific camps present one means of helping children overcome the challenges associated with chronic conditions and improving clinical and psychosocial outcomes. For more than 50 years, bleeding disorders camps (BDCs) in the United States (US) have been promoting independence, self-care, and leadership skills in children with blee...
Introduction FVIII inhibitor development is the most serious contemporary treatment complication in haemophilia A, particularly in previously untreated patients (PUPs). No inhibitors developed in clinical trials in previously treated patients treated with simoctocog alfa (Nuwiq), a fourth-generation recombinant FVIII produced in a human cell line. ...
Introduction: Knee joint bleedings are responsible for quadriceps atrophy and strength deficit in patients with severe haemophilia. Little is known about patients with moderate haemophilia (PWMH).Aim: To evaluate isokinetic quadriceps and hamstrings strength in PWMH and to assess correlation with radiological and clinical parameter.Methods: 18 PWMH...
Published in Haemophilia : the official journal of the World Federation of Hemophilia
Options for management of haemophilia are increasing rapidly with completely novel therapeutic approaches that cannot be compared using traditional factor assays. In addition, as prophylaxis regimens have improved, bleeding rates have decreased, and consequently, it is difficult to show an impact of novel therapies on rates of spontaneous bleeding....
Published in Blood transfusion = Trasfusione del sangue
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 ...
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...
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...
Published in Haemophilia
Introduction The Haemophilia Activities List (HAL) is a preferred instrument to measure self‐reported limitations in activities in persons with haemophilia (PWH). Information on reliability and interpretability of HAL scores is lacking. Aim To examine the test‐retest reliability and smallest detectable change (SDC) of the HAL in adult PWH. Methods ...
Published in Haemophilia
Introduction Surgery is frequently required in persons with haemophilia A (PwHA). Emicizumab, a bispecific, humanized monoclonal antibody, bridges activated factor (F) IX and FX. Management of patients undergoing surgery while receiving emicizumab is of clinical interest due to paucity of data. Aim Review real‐world experience of PwHA with/without ...
