Patient-relevant health outcomes for hemophilia care: Development of an international standard outcomes set

Res Pract Thromb Haemost. 2021 Mar 6;5(4):e12488. doi: 10.1002/rth2.12488. eCollection 2021 May.ABSTRACTBACKGROUND: Patient-relevant health outcomes for persons with hemophilia should be identified and prioritized to optimize and individualize care for persons with hemophilia. Therefore, an international group of persons with hemophilia and multidisciplinary health care providers set out to identify a globally applicable standard set of health outcomes relevant to all individuals with hemophilia.METHODS: A systematic literature search was performed to identify possible health outcomes and risk adjustment variables. Persons with hemophilia and multidisciplinary health care providers were involved in an iterative nominal consensus process to select the most important health outcomes and risk adjustment variables for persons with hemophilia. Recommendations were made for outcome measurement instruments.RESULTS: Persons with hemophilia were defined as all men and women with an X-linked inherited bleeding disorder caused by a deficiency of coagulation factor VIII or IX with plasma activity levels
Source: Thrombosis and Haemostasis - Category: Hematology Authors: Source Type: research

Related Links:

ConclusionsIn our local experience, robotic off-pump HCR in women was as safe as conventional ONCAB and OPCAB and may further improve postoperative outcomes when performed frequently by a dedicated team, producing better perioperative outcomes without compromising survival in the long run.
Source: Journal of Cardiac Surgery - Category: Cardiovascular & Thoracic Surgery Authors: Tags: ORIGINAL ARTICLE Source Type: research
Vori Health transforms back pain treatment by doing less surgery.
Source: Forbes.com Healthcare News - Category: Pharmaceuticals Authors: Tags: Healthcare /healthcare Innovation /innovation Source Type: news
This study evaluated baseball players' preliminary outcomes following anterior glenohumeral capsular ligament reconstruction for internal impingement with anterior instability of the shoulder.METHODS: Twelve baseball players (all male; mean age, 20.5±2.2 years) with internal impingement and anterior instability managed via anterior glenohumeral capsular ligament reconstruction were examined. The mean follow-up period was 25.3±4.6 months. Anterior glenohumeral capsular ligament reconstruction was performed with a knee hamstring autograft for balanced stability and laxity with two major targets: to prevent hype...
Source: Hand Surgery - Category: Surgery Authors: Source Type: research
Can Fam Physician. 2022 Jan;68(1):17-18. doi: 10.46747/cfp.680117.ABSTRACTQUESTION: With the approval of coronavirus disease 2019 (COVID-19) vaccine for children 5 to 11 years of age and concerns among parents in the past year following reported cases of myocarditis and pericarditis in adolescents, should my office continue to encourage all children and young adults to receive the COVID-19 messenger RNA vaccine?ANSWER: Since April 2021 reports have documented cases of myocarditis and pericarditis in adolescents and young adults after messenger RNA COVID-19 vaccination, and several hundred such reports were documented in Ca...
Source: Canadian Family Physician Medecin de Famille Canadien - Category: Primary Care Authors: Source Type: research
J Thromb Haemost. 2021 Jul 1. doi: 10.1111/jth.15444. Online ahead of print.ABSTRACTHemophilia A and B are rare X-linked inherited bleeding disorders caused by complete or partial deficiency in or the absence of coagulation factors VIII and IX. Recurrent joint bleeding (hemarthrosis) is the most frequent clinical manifestation of severe hemophilia. Unless appropriately managed, even sub-clinical hemarthrosiscan lead to the development of hemophilic arthropathy, a disabling condition characterised by joint remodelling, chronic pain and a reduced quality of life, and eventually requires joint replacement. Given the lack of s...
Source: Thrombosis and Haemostasis - Category: Hematology Authors: Source Type: research
Basel, 7 December 2020 - Roche (SIX: RO, ROG; OTCQX: RHHBY) today announced results from a new analysis of pooled, three-year follow-up data of 401 people with haemophilia A from the pivotal HAVEN 1-4 studies, which reinforce the long-term efficacy and safety profile of Hemlibra ® (emicizumab).[1]These data, from adults, adolescents and children with haemophilia A with and without factor VIII inhibitors, were presented at the all-virtual 62nd American Society of Hematology (ASH) Annual Meeting and Exposition, 5-8 December 2020.“The long-term benefit of Hemlibra, with a consistent safety profile and durably effect...
Source: Roche Investor Update - Category: Pharmaceuticals Source Type: news
Abstract BackgroundLimited data exist on the impact of prophylaxis on adults with severe hemophilia A and pre‐existing joint disease. ObjectivesThis analysis describes 3‐year bleeding, joint, health‐related quality‐of‐life (HRQoL), and other outcomes from the open‐label, randomized, multinational SPINART study. Patients/MethodsMales aged 12–50 years with severe hemophilia A, ≥150 FVIII exposure days, no inhibitors, and no prophylaxis for>12 consecutive months in the past 5 years were randomized to sucrose‐formulated recombinant FVIII (rFVIII‐FS) prophylaxis or on‐demand therapy (OD). Data coll...
Source: Journal of Thrombosis and Haemostasis - Category: Hematology Authors: Tags: Original Article ‐ Clinical Haemostasis and Thrombosis Source Type: research
Abstract BACKGROUND: Limited data exist on the impact of prophylaxis on adults with severe hemophilia A and pre-existing joint disease. OBJECTIVES: This analysis describes 3-year bleeding, joint, health-related quality-of-life (HRQoL), and other outcomes from the open-label, randomized, multinational SPINART study. PATIENTS/METHODS: Males aged 12-50 years with severe hemophilia A, ≥150 FVIII exposure days, no inhibitors, and no prophylaxis for>12 consecutive months in the past 5 years were randomized to sucrose-formulated recombinant FVIII (rFVIII-FS) prophylaxis or on-demand therapy (OD). Data col...
Source: Thrombosis and Haemostasis - Category: Hematology Authors: Tags: J Thromb Haemost Source Type: research
More News: Bleeding | Chronic Pain | Haemophilia | Health Management | Hematology | Hemophilia | Men | Pain | Thrombosis | Women