Factors Associated with Compliance with the Treatment Protocol and Mortality in Adults with Hemophilia

References

• Cohen AJ, Kessler CM. Treatment of inherited coagulation disorders. Am J Med. 1995;99(6):675–682. doi:10.1016/S0002-9343(99)80256-3
   Web of Science ®Google Scholar
• Jardim LL, van der Bom JG, Caram‐Deelder C, Gouw SC, Leal Cherchiglia M, Meireles Rezende S. Mortality of patients with haemophilia in Brazil: first report. Haemophilia. 2019;725(3):e146–52.
   Google Scholar
• Srivastava A, Brewer AK, Mauser-Bunschoten EP, et al. Guidelines for the management of hemophilia. Haemophilia. 2013;19(1):e1–47.
   PubMed Web of Science ®Google Scholar
• Guedes VG, Thomas S, Wachholz PA, Souza SAL. Challenges and perspectives in the treatment of patients with haemophilia in Brasil. Rev Assoc Med Bras. 2018;64(10):872–875. doi:10.1590/1806-9282.64.10.872
   Web of Science ®Google Scholar
• Plug I, Van Der Bom JG, Peters M, et al. Mortality and causes of death in patients with hemophilia, 1992–2001: a prospective cohort study. J Thromb Haemost. 2006;4(3):510‐6. doi:10.1111/j.1538-7836.2006.01808.x
   Web of Science ®Google Scholar
• American Diabetes Association. Standards of medical care in diabetes—2014. Diabetes Care. 2014;37(Suppl 1):S14–80. doi:10.2337/dc14-S014
   PubMed Web of Science ®Google Scholar
• Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management of chronic disease in primary care. JAMA. 2002;288(19):2469–2475. doi:10.1001/jama.288.19.2469
   PubMed Web of Science ®Google Scholar
• Coleman MT, Newton KS. Supporting self-management in patients with chronic illness. Am Fam Physician. 2005;72(8):1503–1510.
   PubMed Web of Science ®Google Scholar
• Wagner EH. The role of patient care teams in chronic disease management. BMJ. 2000;320(7234):569–572. doi:10.1136/bmj.320.7234.569
   PubMed Web of Science ®Google Scholar
• Barry V, Steffens C, Mattis S, Sidonio RF Jr, Tran DQ, Kempton CL. A cross-sectional study of non-attendance among patients at a US hemophilia treatment center 2010–2014. Haemophilia. 2018;24(6):902–910. doi:10.1111/hae.13553
   PubMed Web of Science ®Google Scholar
• World Federation of Hemophilia. Annual Global Survey 2017. Montreal, Canada: World Federation of Hemophilia; 2017.
   Google Scholar
• Massuda A, Hone T, Leles FAG, de Castro MC, Atun R. The Brazilian health system at crossroads: progress, crisis and resilience. BMJ Glob Health. 2018;3(4):e000829. doi:10.1136/bmjgh-2018-000829
   PubMed Web of Science ®Google Scholar
• Carmo RA, Martins ML, Chaves DG, Dezanet LNC. Prevalence and risk factors associated with hepatitis C among Brazilian male patients with haemophilia: A long‐term follow‐up. Haemophilia. 2019;25(3):447–455. doi:10.1111/hae.13728
   PubMed Web of Science ®Google Scholar
• Ferreira AA, Leite IC, Bustamante-Teixeira MT, Guerra MR. Hemophilia A in Brazil – epidemiology and treatment developments. J Blood Med. 2014;5:175–184. doi:10.2147/JBM.S68234
   Google Scholar
• Rezende SM, Pinheiro K, Caram C, Genovez G, Barca D. Registry of inherited coagulopathies in Brazil: first report. Haemophilia. 2009;15(1):142‐9. doi:10.1111/j.1365-2516.2008.01907.x
   Web of Science ®Google Scholar
• Rezende SM, Rodrigues S, Brito K, et al. Evaluation of a web‐based registry of inherited bleeding disorders: a descriptive study of the Brazilian experience with HEMOVIDAweb Coagulopatias. Orphanet J Rare Dis. 2017;12(1):27. doi:10.1186/s13023-016-0560-6
   Google Scholar
• Van Os SB, Troop NA, Sullivan KR, Hart DP. Adherence to prophylaxis in adolescents and young adults with severe haemophilia: a quantitative study with patients. PLoS One. 2017;12(1):e0169880. doi:10.1371/journal.pone.0169880
   PubMed Web of Science ®Google Scholar
• De Moerloose P, Urbancik W, Van Den Berg HM, et al. A survey of adherence to haemophilia therapy in six European countries: results and recommendations. Haemophilia. 2008;14(5):931–938. doi:10.1111/j.1365-2516.2008.01843.x
   PubMed Web of Science ®Google Scholar
• Schrijvers LH, Beijlevelt‐van der Zande M, Peters M, et al. Adherence to prophylaxis and bleeding outcome in haemophilia: a multicentre study. Br J Haematol. 2016;174(3):454‐60. doi:10.1111/bjh.14072
   Web of Science ®Google Scholar
• Lee Mortensen G, Strand AM, Almén L. Adherence to prophylactic haemophilic treatment in young patients transitioning to adult care: A qualitative review. Haemophilia. 2018;24(6):862–872. doi:10.1111/hae.13621
   Web of Science ®Google Scholar
• Pérez-Robles T, Romero-Garrido JA, Rodriguez-Merchan EC, Herrero-Ambrosio A. Objective quantification of adherence to prophylaxis in haemophilia patients aged 12 to 25 years and its potential association with bleeding episodes. Thromb Res. 2016;143:22–27. doi:10.1016/j.thromres.2016.04.015
   Web of Science ®Google Scholar
• Geraghty S, Dunkley T, Harrington C, Lindvall K, Maahs J, Sek J. Practice patterns in haemophilia A therapy – global progress towards optimal care. Haemophilia. 2006;12(1):75–81. doi:10.1111/j.1365-2516.2006.01189.x
   PubMed Web of Science ®Google Scholar
• Hacker MR, Geraghty S, Manco-Johnson M. Barriers to compliance with prophylaxis therapy in haemophilia. Haemophilia. 2001;7(4):392–396.
   PubMed Web of Science ®Google Scholar
• Chang CY, Yeh GC, Lin SY, Tseng IJ, Tsai CH, Lee YW. Trends in the epidemiology, diagnosed age and mortality rate of haemophiliacs in Taiwan: a population‐based study, 1997–2009. Haemophilia. 2014;20(4):535‐40. doi:10.1111/hae.12373
   Web of Science ®Google Scholar
• Darby SC, Kan SW, Spooner RJ, et al. Mortality rates, life expectancy, and causes of death in people with hemophilia A or B in the United Kingdom who were not infected with HIV. Blood. 2007;110(3):815‐825. doi:10.1182/blood-2006-10-050435
   Web of Science ®Google Scholar
• Reitter S, Waldhoer T, Vutuc C, Lechner K, Pabinger I. Survival in a cohort of patients with haemophilia at the haemophilia care center in Vienna, Austria, from 1983 to 2006. Haemophilia. 2009;15(4):888‐93. doi:10.1111/j.1365-2516.2009.02029.x
   Web of Science ®Google Scholar
• Andersson NG, Auerswald G, Barnes C, et al. Intracranial haemorrhage in children and adolescents with severe haemophilia A or B—the impact of prophylactic treatment. Br J Haematol. 2017;179(2):298‐307. doi:10.1111/bjh.14844
   Web of Science ®Google Scholar
• Aledort LM, Coates J. Can managed care support hemophilia in the 21st century? Am J Hematol. 2005;79(2):171–173. doi:10.1002/ajh.20409
   Web of Science ®Google Scholar
• Dalton DR. Hemophilia in the managed care setting. Am J Manag Care. 2015;21(6 Suppl):S123–30.
   PubMed Web of Science ®Google Scholar
• Lamiani G, Strada I, Mancuso ME, et al. Factors influencing illness representations and perceived adherence in haemophilic patients: a pilot study. Haemophilia. 2015;21(5):598‐604. doi:10.1111/hae.12654
   Web of Science ®Google Scholar
• Larsen NM, Oakley MA, Soucie M. Mortality rate and risk factors among males with hemophilia receiving care in U.S. Hemophilia Treatment Centers (HTCs). Blood. 2007;110(11):1143. doi:10.1182/blood.V110.11.1143.1143
   Web of Science ®Google Scholar
• Soucie JM, Nuss R, Evatt B, et al. Mortality among males with hemophilia: relations with source of medical care. The Hemophilia Surveillance System Project Investigators. Blood. 2000;96(2):437–442.
   Web of Science ®Google Scholar
• Soucie J, Symons J, Evatt B, et al. Hemophilia Surveillance System Project Investigators. Home-based factor infusion therapy and hospitalization for bleeding complications among males with haemophilia. Haemophilia. 2001;7(2):198–206. doi:10.1046/j.1365-2516.2001.00484.x
   Google Scholar
• Catz SL, McClure JB, Jones GN, Brantley PJ. Predictors of outpatient medical appointment attendance among persons with HIV. AIDS Care. 1999;11(3):361–373. doi:10.1080/09540129947983
   PubMed Web of Science ®Google Scholar
• Mugavero MJ, Lin HY, Willig JH, et al. Missed visits and mortality in patients establishing initial outpatient HIV treatment. Clin Infect Dis. 2009;48(2):248–256. doi:10.1086/595705
   PubMed Web of Science ®Google Scholar