Exclusive: Nurses set to lead ‘revolution’ in haemophilia care

Nursing is set to be at the forefront of “revolutionary” changes in haemophilia care, but the profession still carries a burden of “guilt” from the contaminated blood scandal that saw hundreds of NHS patients infected with HIV and hepatitis C, according to a leading specialist nurse.
Source: Nursing Times - Category: Nursing Source Type: news

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Authors: Sho T, Suda G, Kimura M, Shimazaki T, Maehara O, Shigesawa T, Suzuki K, Nakamura A, Ohara M, Umemura M, Izumi T, Kawagishi N, Baba M, Nakai M, Natsuizka M, Morikawa K, Ogawa K, Sakamoto N, NORTE Study Group Abstract The efficacy and safety of glecaprevir and pibrentasvir in Japanese patients with human immunodeficiency virus (HIV) and/or genotype 3 hepatitis C virus (HCV) infection is yet to be clarified. This is because no or only a few patients have been included in Japanese phase 3 trials. We herein report for the first time the successful treatment of glecaprevir and pibrentasvir in three Japanese pati...
Source: Internal Medicine - Category: Internal Medicine Tags: Intern Med Source Type: research
The objective of this study is to determine the prevalence of CKD and CKD risk factors among older men with moderate and severe hemophilia.Methods: This CKD cohort study is an extension of a U.S. national study sponsored by the American Thrombosis and Hemostasis Network (ATHN). The study, entitled ATHN 1: A Cross-Sectional Analysis of Cardiovascular Disease (CVD) in the Hemophilia Population, began enrollment in 10/2012. Inclusion criteria are men with moderate or severe congenital hemophilia A or B (FVIII or IX level ≤ 5%), age 54-73. Men with an additional bleeding disorder (besides liver dysfunction) were excluded. I...
Source: Blood - Category: Hematology Authors: Tags: 322. Disorders of Coagulation or Fibrinolysis: Poster II Source Type: research
Introduction: Recombinant factor IX Fc fusion protein (rFIXFc) was the first extended half-life FIX product approved in the United States to treat children and adults with hemophilia B. Long-term data from clinical trials have demonstrated the safety and efficacy of rFIXFc as well as an extended dosing interval (once weekly or every 10-14 days based on individual needs); however, real-world data are limited (Wang et al. Haemophilia, 2018; Buckley et al. AMCP NEXUS, 2015). We therefore performed a retrospective chart review to further understand the clinical experience and outcomes associated with real-world treatment of he...
Source: Blood - Category: Hematology Authors: Tags: 322. Disorders of Coagulation or Fibrinolysis: Poster II Source Type: research
ConclusionsThis study suggests that considerable clinical, emotional, and day-to-day disease burden exists in PwHA-WO, even among those with mild and moderate severity. Although joint bleed-related outcomes varied by severity, patients with moderate HA reported joint-related outcomes comparable to those with severe HA. However, limitation of daily activities did not differ by severity. PwHA-WO with mild, moderate and severe HA reported limitation in physical activities, which can impair their QoL. Better understanding of disease burden by severity among PwHA-WO will help in planning future interventions to address these bu...
Source: Blood - Category: Hematology Authors: Tags: 901. Health Services Research-Non-Malignant Conditions: Poster III Source Type: research
In conclusion, most patients with severe haemophilia receive prophylactic treatment. HCV and HIV infections are still important issues in the Austrian haemophilia population. PMID: 30419589 [PubMed - as supplied by publisher]
Source: Hamostaseologie - Category: Hematology Authors: Tags: Hamostaseologie Source Type: research
This study aimed to assess the associations between CLD and its risk factors using data from the H3 study, and to suggest implications for optimal care. Data from 13 European countries were collected at a single time-point (2011–2013). Univariate and multivariate logistic regression (MLR) analyses were performed. A total of 532 PWH were included with either hemophilia A (n = 467) or hemophilia B (n = 65). A total of 127 (24%) were diagnosed with CLD. Hepatitis C virus (HCV), human immunodeficiency virus (HIV), total cholesterol, and severe hemophilia were significant risk factors in univariate logistic regr...
Source: Medicine - Category: Internal Medicine Tags: Research Article: Observational Study Source Type: research
Abstract Preparative and clinical transfusiology and transfusion, a majestic part of clinical medicine saved the life of hundred millions. However, bloodborne or transmitted infections became a serious issue in France in the 1980s, when many haemophiliacs were infected by HIV or hepatitis C virus by receiving plazma FactorVIII concentrates. This resulted in a quick and powerful development of screening as well as pathogen-inactivating methods, which reduced pathogen contamination and transmission to minimal levels. Times and pathogens are continously and rather quickly changing, so during the last decade many - no...
Source: Orvosi Hetilap - Category: General Medicine Authors: Tags: Orv Hetil Source Type: research
AbstractIntroductionPegylated interferon-based therapy for hepatitis C virus (HCV) negatively impacts nutritional state and patient-reported outcomes (PROs) such as health-related quality of life (HRQL). Clinical trials with direct-acting antivirals (DAAs) report significant PRO improvement but real-world data are still scarce.MethodsProspective cohort study recruiting HCV patients treated with DAAs in 2015 –2016. Data at baseline, end of treatment (EOT) and 12 weeks thereafter (FU12) included: patient-reported medication adherence; SF-36; Karnofsky Performance Status; paid labour productivity; physical exercise...
Source: Infectious Diseases and Therapy - Category: Infectious Diseases Source Type: research
ConclusionThis novelF8 deletion as a cause of haemophilia A did not result in generation of inhibitory antibodies to Factor VIII treatment and may have impact on (prenatal) diagnosis, genetic counselling, and treatment decisions in the affected family as well as in other families diagnosed with thisF8 mutation. Finally, this novel mutation should be included in the panel of known genetic variants inF8 when searching for the genetic etiology in patients suspected of HEMA.
Source: BMC Hematology - Category: Hematology Source Type: research
CONCLUSIONS: after transplantation, hemophilia A cure and improved bleeding phenotype of type-3 vWD reduced morbidity and mortality. However, potential graft reinfection with HCV and relapsing HCC cast a shadow over these optimum results. PMID: 29931985 [PubMed - as supplied by publisher]
Source: Revista Espanola de Enfermedades Digestivas - Category: Gastroenterology Tags: Rev Esp Enferm Dig Source Type: research
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