Risk factors for joint bleeding in severe hemophilia A and B: analysis of the Community Counts longitudinal surveillance cohort

Abstract: Joint bleeding is the primary determinant of end-stage arthropathy in hemophilia; joint bleeding has greatly decreased with the use of prophylaxis and introduction of highly effective therapies. This study aimed to determine current risk factors for joint bleeding in persons with severe he...

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Main Authors: Marilyn J. Manco-Johnson, Binh Le, Suchitra Acharya, Sanjay Ahuja, Meera Chitlur, Divyaswathi Citla-Sridhar, Stacey Ann Fedewa, Daniel Isaac, Roshni Kulkarni, Laura A. Schieve, Anjali Sharathkumar, J. Michael Soucie
Format: Article
Language:English
Published: Elsevier 2025-08-01
Series:Blood Vessels, Thrombosis & Hemostasis
Online Access:http://www.sciencedirect.com/science/article/pii/S295032722500004X
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author Marilyn J. Manco-Johnson
Binh Le
Suchitra Acharya
Sanjay Ahuja
Meera Chitlur
Divyaswathi Citla-Sridhar
Stacey Ann Fedewa
Daniel Isaac
Roshni Kulkarni
Laura A. Schieve
Anjali Sharathkumar
J. Michael Soucie
author_facet Marilyn J. Manco-Johnson
Binh Le
Suchitra Acharya
Sanjay Ahuja
Meera Chitlur
Divyaswathi Citla-Sridhar
Stacey Ann Fedewa
Daniel Isaac
Roshni Kulkarni
Laura A. Schieve
Anjali Sharathkumar
J. Michael Soucie
author_sort Marilyn J. Manco-Johnson
collection DOAJ
description Abstract: Joint bleeding is the primary determinant of end-stage arthropathy in hemophilia; joint bleeding has greatly decreased with the use of prophylaxis and introduction of highly effective therapies. This study aimed to determine current risk factors for joint bleeding in persons with severe hemophilia A or B. Demographic, treatment, and bleeding outcome data from Community Counts, a US national surveillance project, were analyzed. Data were collected at annual visits between 2013 and 2022. Eligibility included factor VIII or IX of <1%, no inhibitor, age of 2 to 44 years, and on treatment with continuous prophylaxis. Annual joint bleeding rate (AJBR) differences across demographic and clinical subgroups were compared via rate ratios and 95% confidence intervals, and with multivariate methods accounting for multiple measurements over time. The analysis included 2527 males with hemophilia, 7211 observation years, and 10 046 joint bleeds. Lower AJBR in hemophilia A was most strongly associated with use of emicizumab. For both hemophilia A and B, patient-associated factors, younger age, fewer missed doses, and full employment were all independently associated with lower AJBR, as was treatment in the Northeast of the United States. The findings of this comprehensive analysis of a large, diverse sample drawn from hemophilia treatment centers across the United States, underscore the important contributions of patient, community, and treatment factors on joint outcomes in severe hemophilia. Use of emicizumab and few missed doses independently predicted low AJBR, highlighting the interplay of access and adherence to care.
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spelling doaj-art-d8fefd23fdfa424e9080b36096a2b72f2025-08-20T04:02:27ZengElsevierBlood Vessels, Thrombosis & Hemostasis2950-32722025-08-012310004710.1016/j.bvth.2025.100047Risk factors for joint bleeding in severe hemophilia A and B: analysis of the Community Counts longitudinal surveillance cohortMarilyn J. Manco-Johnson0Binh Le1Suchitra Acharya2Sanjay Ahuja3Meera Chitlur4Divyaswathi Citla-Sridhar5Stacey Ann Fedewa6Daniel Isaac7Roshni Kulkarni8Laura A. Schieve9Anjali Sharathkumar10J. Michael Soucie11Department of Pediatrics, Hemophilia and Thrombosis Center, University of Colorado Anschutz Medical Campus, Aurora, CO; Correspondence: Marilyn J. Manco-Johnson, Department of Pediatrics, Hemophilia and Thrombosis Center, University of Colorado Anschutz Medical Campus and Children's Hospital Colorado, 13199 E Montview Blvd, Suite 100, Aurora, CO 80045;Division of Blood Disorders and Public Health Genomics, Centers for Disease Control and Prevention, Atlanta, GADepartment of Pediatrics, Hemostasis and Thrombosis Center, Cohen Children’s Medical Center, Northwell Health, New Hyde Park, NYDivision of Pediatric Hematology and Oncology, University Hospitals Rainbow Babies &amp; Children’s Hospital, Cleveland, OHDivision of Hematology/Oncology, Carmen and Ann Adams Department of Pediatrics, Children’s Hospital of Michigan, Central Michigan University College of Medicine, Detroit, MISection of Pediatric Hematology and Oncology, University of Arkansas for Medical Sciences/Arkansas Children’s Hospital, Little Rock, ARDepartment of Hematology and Medical Oncology, Emory University, Atlanta, GADepartment of Pediatrics, Center for Bleeding and Clotting Disorders, Michigan State University, East Lansing, MIDepartment of Pediatrics, Center for Bleeding and Clotting Disorders, Michigan State University, East Lansing, MIDivision of Blood Disorders and Public Health Genomics, Centers for Disease Control and Prevention, Atlanta, GAStead Family Department of Pediatrics, Carver College of Medicine, Iowa City, IADivision of Blood Disorders and Public Health Genomics, Centers for Disease Control and Prevention, Atlanta, GA; Peers and Partners, Inc, Atlanta, GAAbstract: Joint bleeding is the primary determinant of end-stage arthropathy in hemophilia; joint bleeding has greatly decreased with the use of prophylaxis and introduction of highly effective therapies. This study aimed to determine current risk factors for joint bleeding in persons with severe hemophilia A or B. Demographic, treatment, and bleeding outcome data from Community Counts, a US national surveillance project, were analyzed. Data were collected at annual visits between 2013 and 2022. Eligibility included factor VIII or IX of <1%, no inhibitor, age of 2 to 44 years, and on treatment with continuous prophylaxis. Annual joint bleeding rate (AJBR) differences across demographic and clinical subgroups were compared via rate ratios and 95% confidence intervals, and with multivariate methods accounting for multiple measurements over time. The analysis included 2527 males with hemophilia, 7211 observation years, and 10 046 joint bleeds. Lower AJBR in hemophilia A was most strongly associated with use of emicizumab. For both hemophilia A and B, patient-associated factors, younger age, fewer missed doses, and full employment were all independently associated with lower AJBR, as was treatment in the Northeast of the United States. The findings of this comprehensive analysis of a large, diverse sample drawn from hemophilia treatment centers across the United States, underscore the important contributions of patient, community, and treatment factors on joint outcomes in severe hemophilia. Use of emicizumab and few missed doses independently predicted low AJBR, highlighting the interplay of access and adherence to care.http://www.sciencedirect.com/science/article/pii/S295032722500004X
spellingShingle Marilyn J. Manco-Johnson
Binh Le
Suchitra Acharya
Sanjay Ahuja
Meera Chitlur
Divyaswathi Citla-Sridhar
Stacey Ann Fedewa
Daniel Isaac
Roshni Kulkarni
Laura A. Schieve
Anjali Sharathkumar
J. Michael Soucie
Risk factors for joint bleeding in severe hemophilia A and B: analysis of the Community Counts longitudinal surveillance cohort
Blood Vessels, Thrombosis & Hemostasis
title Risk factors for joint bleeding in severe hemophilia A and B: analysis of the Community Counts longitudinal surveillance cohort
title_full Risk factors for joint bleeding in severe hemophilia A and B: analysis of the Community Counts longitudinal surveillance cohort
title_fullStr Risk factors for joint bleeding in severe hemophilia A and B: analysis of the Community Counts longitudinal surveillance cohort
title_full_unstemmed Risk factors for joint bleeding in severe hemophilia A and B: analysis of the Community Counts longitudinal surveillance cohort
title_short Risk factors for joint bleeding in severe hemophilia A and B: analysis of the Community Counts longitudinal surveillance cohort
title_sort risk factors for joint bleeding in severe hemophilia a and b analysis of the community counts longitudinal surveillance cohort
url http://www.sciencedirect.com/science/article/pii/S295032722500004X
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