Invisible Bleeds: Lived Experiences and Barriers to Care for Men with Hemophilia

DISCUSSION: Men with hemophilia described significant symptom burden and areas of ongoing need. Collaborative efforts between hematologists, emergency room physicians, and surgeons to establish hospital-specific testing, treatment and referral guidelines, and regular HTC audits may help address these care gaps, providing more person-centred, equitable care. Future work is required to implement these strategies and monitor their effects.PMID:34689399 | DOI:10.1111/jth.15570
Source: Thrombosis and Haemostasis - Category: Hematology Authors: Source Type: research

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Res Pract Thromb Haemost. 2021 Oct 11;5(7):e12602. doi: 10.1002/rth2.12602. eCollection 2021 Oct.ABSTRACTINTRODUCTION: In 2017, all people with severe hemophilia B in Ireland switched to recombinant factor IX Fc fusion protein concentrate (rFIXFc) prophylaxis. Patient-reported outcomes (PROs) and health-related quality of life (HRQoL) are important to evaluate with new treatments.AIMS: To assess HRQoL in people with severe hemophilia B and their experience after switching to rFIXFc prophylaxis.METHODS: Participants completed a Patient Reported Outcomes Burden and Experience (PROBE) questionnaire on initiation and following...
Source: Thrombosis and Haemostasis - Category: Hematology Authors: Source Type: research
CONCLUSION: Switching from SHL to rFVIIIFc/rFIXFc resulted in short-term meaningful improvement in overall HRQoL and other PROMs in a small proportion. Longitudinal changes on PROMs are affected by ceiling effects and response shift, warranting further studies in instrument optimization in the era of EHL and nonfactor products.PMID:34667922 | PMC:PMC8505988 | DOI:10.1002/rth2.12601
Source: Thrombosis and Haemostasis - Category: Hematology Authors: Source Type: research
Res Pract Thromb Haemost. 2021 Oct 11;5(7):e12602. doi: 10.1002/rth2.12602. eCollection 2021 Oct.ABSTRACTINTRODUCTION: In 2017, all people with severe hemophilia B in Ireland switched to recombinant factor IX Fc fusion protein concentrate (rFIXFc) prophylaxis. Patient-reported outcomes (PROs) and health-related quality of life (HRQoL) are important to evaluate with new treatments.AIMS: To assess HRQoL in people with severe hemophilia B and their experience after switching to rFIXFc prophylaxis.METHODS: Participants completed a Patient Reported Outcomes Burden and Experience (PROBE) questionnaire on initiation and following...
Source: Thrombosis and Haemostasis - Category: Hematology Authors: Source Type: research
CONCLUSION: Switching from SHL to rFVIIIFc/rFIXFc resulted in short-term meaningful improvement in overall HRQoL and other PROMs in a small proportion. Longitudinal changes on PROMs are affected by ceiling effects and response shift, warranting further studies in instrument optimization in the era of EHL and nonfactor products.PMID:34667922 | PMC:PMC8505988 | DOI:10.1002/rth2.12601
Source: Thrombosis and Haemostasis - Category: Hematology 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
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...
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
Conclusion:The 7 PROMIS domains were sensitive to several adult hemophilia disease severity indicators in a non-acute care setting. Overall scores reported by patients with hemophilia generally mirrored the normative PROMIS sample scores. However, patients with hemophilia who experienced pain reported scores significantly worse than the normative sample. PROMIS instruments provide a potentially valuable tool to study the impact of hemophilia and suggest usefulness in research and clinical practice. Additional studies are needed to assess responsiveness in PROMIS score with changes in disease status over time and in women w...
Source: Blood - Category: Hematology Authors: Tags: 903. Outcomes Research-Non-Malignant Hematology: Health Outcomes in Hemophilia, Thrombosis, ITP, and Hereditary Transthyreitin Amyloidosis Source Type: research
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
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