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Patient Related Outcome Measures Volume 10, 2019 - Issue
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Original Research

Mild-severe hemophilia B impacts relationships of US adults and children with hemophilia B and their families: results from the B-HERO-S study

Susan Cutter1 Penn Comprehensive Hemophilia and Thrombosis Program, Hospital of the University of Pennsylvania, Philadelphia, PA, USACorrespondence[email protected]
,
Christine Guelcher2 Comprehensive Hemostasis and Thrombosis Program, Children’s National Health System, Washington, DC, USA
,
Susan Hunter3 Hemostasis and Thrombosis Center, University Hospitals Cleveland Medical Center, Cleveland, OH, USA
,
Dawn Rotellini4 National Hemophilia Foundation, New York, NY, USA
,
Spencer Dunn5 Center for Comprehensive Care and Diagnosis of Inherited Bleeding Disorders, Orange, CA, USA
&
David L Cooper6 Novo Nordisk Inc., Plainsboro, NJ, USA
Pages 257-266 | Published online: 16 Aug 2019

References

  • Srivastava A, Brewer AK, Mauser-Bunschoten EP, et al. Guidelines for the management of hemophilia. Haemophilia. 2013;19(1):e1–e47.22776238
  • Luck JV Jr., Silva M, Rodriguez-Merchan EC, Ghalambor N, Zahiri CA, Finn RS. Hemophilic arthropathy. J Am Acad Orthop Surg. 2004;12(4):234–245.15473675
  • Forsyth AL, Witkop M, Lambing A, et al. Associations of quality of life, pain, and self-reported arthritis with age, employment, bleed rate, and utilization of hemophilia treatment center and health care provider services: results in adults with hemophilia in the HERO study. Patient Prefer Adher. 2015;9:1549–1560. doi:10.2147/PPA.S87659
  • Neufeld EJ, Recht M, Sabio H, et al. Effect of acute bleeding on daily quality of life assessments in patients with congenital hemophilia with inhibitors and their families: observations from the dosing observational study in hemophilia. Value Health. 2012;15(6):916–925. doi:10.1016/j.jval.2012.05.00522999142
  • Forsyth AL, Gregory M, Nugent D, et al. Haemophilia Experiences, Results and Opportunities (HERO) study: survey methodology and population demographics. Haemophilia. 2014;20(1):44–51. doi:10.1111/hae.1223923902228
  • Cassis FR, Buzzi A, Forsyth A, et al. Haemophilia Experiences, Results, and Opportunities (HERO) study: influence of haemophilia on interpersonal relationships as reported by adults with haemophilia and parents of children with haemophilia. Haemophilia. 2014;20(4):e287–e295. doi:10.1111/hae.1245424800872
  • Buckner TW, Witkop M, Guelcher C, et al. Management of US men, women, and children with hemophilia and methods and demographics of the Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study. European Journal of Haematology. 2017;98(Suppl 86):5–17. doi:10.1111/ejh.1285428319338
  • Plug I, Mauser-Bunschoten EP, Brocker-Vriends AH, et al. Bleeding in carriers of hemophilia. Blood. 2006;108(1):52–56. doi:10.1182/blood-2005-09-387916551972
  • Centers for Disease Control and Prevention. Community Counts - the HTC Population Profile 2016 Available from: https://www.cdc.gov/ncbddd/hemophilia/communitycounts/data-community-counts.html. Accessed July 30, 2019.

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