A Cross-National Survey of People Living with Hemophilia: Impact on Daily Living and Patient Education in Central Europe

References

• Colvin BT, Astermark J, Fischer K, et al. European principles of haemophilia care. Haemophilia. 2008;14(2):361–374. doi:10.1111/j.1365-2516.2007.01625.x
   PubMed Web of Science ®Google Scholar
• Srivastava A, Santagostino E, Dougall A, et al. WFH guidelines for the management of hemophilia, 3rd edition. Haemophilia. 2020;26(Suppl 6):1–158. doi:10.1111/hae.14046
   PubMed Web of Science ®Google Scholar
• Noone D, O’Mahony B, Peyvandi F, Makris M, Bok A. Evolution of haemophilia care in Europe: 10 years of the principles of care. Orph J Rare Dis. 2020;15(1):184. doi:10.1186/s13023-020-01456-y
   Web of Science ®Google Scholar
• European Association of Hemophilia and Allied Disorders (EAHAD). Certification Centres; 2020. Available from: https://www.euhass.org/aspxpages/certcentres.aspx. Accessed October 26, 2020.
   Google Scholar
• Hughes T, Brok-Kristensen M, Gargeya Y, et al. “What more can we ask for?”: an ethnographic study of challenges and possibilities for people living with haemophilia. J Haem Pract. 2020;7(1):25–36. doi:10.17225/jhp00151
   Google Scholar
• Florio GmbH. Florio; 2020. https://florio.com/. Accessed December 8, 2020.
   Google Scholar
• Mahlangu J. rFVIIIFC for hemophilia A prophylaxis. Expert Rev Hematol. 2018;11(12):937–943. doi:10.1080/17474086.2018.1549478
   PubMed Web of Science ®Google Scholar
• Mahlangu JN. Bispecific antibody emicizumab for hemophilia A: a breakthrough for patients with inhibitors. BioDrugs. 2018;32(6):561–570. doi:10.1007/s40259-018-0315-0
   PubMed Web of Science ®Google Scholar
• Mejia-Carvajal C, Czapek EE, Valentino LA. Life expectancy in hemophilia outcome. J Thromb Haemost. 2006;4(3):507–509. doi:10.1111/j.1538-7836.2006.01776.x
   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
   PubMed Web of Science ®Google Scholar
• O’Hara J, Hughes D, Camp C, Burke T, Carroll L, Diego D-AG. The cost of severe haemophilia in Europe: the CHESS study. Orph J Rare Dis. 2017;12(1):106. doi:10.1186/s13023-017-0660-y
   PubMed Web of Science ®Google Scholar
• Oldenburg J, Brackmann HH, Schwaab R. Risk factors for inhibitor development in hemophilia A. Haematologica. 2000;85(10 Suppl):7–13; discussion 13–14.
   Google Scholar
• Bertamino M, Riccardi F, Banov L, Svahn J, Molinari AC. Hemophilia care in the pediatric age. J Clin Med. 2017;6(5):54. doi:10.3390/jcm6050054
   PubMed Web of Science ®Google Scholar
• Hay CR, Palmer B, Chalmers E, et al. Incidence of factor VIII inhibitors throughout life in severe hemophilia A in the United Kingdom. Blood. 2011;117(23):6367–6370. doi:10.1182/blood-2010-09-308668
   PubMed Web of Science ®Google Scholar
• Oedekoven M, Herrmann WJ, Ernsting C, et al. Patients’ health literacy in relation to the preference for a general practitioner as the source of health information. BMC Fam Pract. 2019;20(1):94. doi:10.1186/s12875-019-0975-y
   Web of Science ®Google Scholar
• European Centre for Disease Prevention and Control (ECDC). A literature review on health information-seeking behavior on the web: a health consumer and health professional perspective; 2011. Available from: https://www.ecdc.europa.eu/sites/default/files/media/en/publications/Publications/Literature%20review%20on%20health%20information-seeking%20behaviour%20on%20the%20web.pdf. Accessed November 4, 2020.
   Google Scholar
• Kummervold PE, Wynn R. Health information accessed on the internet: the development in 5 European countries. Int J Telemed Appl. 2012;2012:297416. doi:10.1155/2012/297416
   PubMedGoogle Scholar
• Cutilli CC. Seeking health information: what sources do your patients use? Orthop Nurs. 2010;29(3):214–219. doi:10.1097/NOR.0b013e3181db5471
   PubMed Web of Science ®Google Scholar
• European Commission. Europeans becoming enthusiastic users of online health information; 2014. Available from: https://digital-strategy.ec.europa.eu/en/news/europeans-becoming-enthusiastic-users-online-health-information. Accessed November 4, 2020.
   Google Scholar
• European Commission. 53% of EU citizens sought health information online. Available from: https://ec.europa.eu/eurostat/web/products-eurostat-news/-/DDN-20200327-1. Accessed November 4, 2020.
   Google Scholar
• Beck F, Richard J-B, Nguyen-Thanh V, Montagni I, Parizot I, Renahy E. Use of the internet as a health information resource among French young adults: results From a nationally representative survey. J Med Internet Res. 2014;16(5):e128. doi:10.2196/jmir.2934
   PubMed Web of Science ®Google Scholar
• Bidmon S, Terlutter R. Gender differences in searching for health information on the internet and the virtual patient-physician relationship in Germany: exploratory results on how men and women differ and why. J Med Internet Res. 2015;17(6):e156. doi:10.2196/jmir.4127
   PubMed Web of Science ®Google Scholar
• Jacobs W, Amuta AO, Jeon KC. Health information seeking in the digital age: an analysis of health information seeking behavior among US adults. Cogent Soc Sci. 2017;3(1).
   Google Scholar
• Flood E, Pocoski J, Michaels LA, Bell JA, Valluri S, Sasanè R. Illustrating the impact of mild/moderate and severe haemophilia on health-related quality of life: hypothesised conceptual models. Eur J Haematol. 2014;93(Suppl 75):9–18. doi:10.1111/ejh.12328
   Web of Science ®Google Scholar
• 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 Adherence. 2015;9:1549–1560. doi:10.2147/PPA.S87659
   PubMed Web of Science ®Google Scholar
• Lorenzato CS, Santos RB, Fagundes GZZ, Ozelo MC. Haemophilia Experiences, Results and Opportunities (HERO study) in Brazil: assessment of the psychosocial effects of haemophilia in patients and caregivers. Haemophilia. 2019;25(4):640–650. doi:10.1111/hae.13774
   Web of Science ®Google Scholar
• O’Hara S, Castro FA, Black J, et al. Disease burden and remaining unmet need in patients with haemophilia A treated with primary prophylaxis. Haemophilia. 2021;27:113–119. doi:10.1111/hae.14171
   Web of Science ®Google Scholar
• Mahlangu J, Powell JS, Ragni MV, et al. Phase 3 study of recombinant factor VIII Fc fusion protein in severe hemophilia A. Blood. 2014;123(3):317–325. doi:10.1182/blood-2013-10-529974
   PubMed Web of Science ®Google Scholar
• Mahlangu J, Oldenburg J, Paz-Priel I, et al. Emicizumab prophylaxis in patients who have hemophilia A without inhibitors. N Engl J Med. 2018;379(9):811–822. doi:10.1056/NEJMoa1803550
   PubMed Web of Science ®Google Scholar
• Croteau S. Evolving complexity in hemophilia management. Pediatr Clin North Am. 2018;65(3):407–425. doi:10.1016/j.pcl.2018.01.004
   Web of Science ®Google Scholar
• Swire-Thompson B, Lazer D. Public health and online misinformation: challenges and recommendations. Ann Rev Public Health. 2020;41(1):433–451. doi:10.1146/annurev-publhealth-040119-094127
   PubMed Web of Science ®Google Scholar
• Golubnitschaja O, Kinkorova J, Costigliola V. Predictive, preventive and personalised medicine as the hardcore of ‘Horizon 2020ʹ: EPMA position paper. EPMA J. 2014;5(1):6. doi:10.1186/1878-5085-5-6
   PubMedGoogle Scholar
• Gold DT, McClung B. Approaches to patient education: emphasizing the long-term value of compliance and persistence. Am J Med. 2006;119(4):S32–S37. doi:10.1016/j.amjmed.2005.12.021
   PubMed Web of Science ®Google Scholar
• Vestergaard LS, Nielsen J, Richter L, et al. Excess all-cause mortality during the COVID-19 pandemic in Europe – preliminary pooled estimates from the EuroMOMO network, March to April 2020. Euro Surveill. 2020;25(26):2001214. doi:10.2807/1560-7917.ES.2020.25.26.2001214
   Google Scholar
• Eurodis. 9 in 10 people living with a rare disease experiencing interruption in care because of COVID-19; 2020. Available from: https://download2.eurordis.org/documents/pdf/PressRelease_COVID19surveyresults.pdf. Accessed November 5, 2020.
   Google Scholar
• European Hemophilia Consortium (EHC). EHC-EAHAD joint statement on home delivery of treatment during COVID-19 pandemic. Available from: https://www.ehc.eu/ehc-eahad-joint-statement-on-the-delivery-of-home-treatment-during-covid-19-pandemic/. Accessed November 9, 2020.
   Google Scholar
• Nemes L, Blatny J, Klukowska A, Spasova M, Trakymiene SS, Serban M. Haemophilia care in Central and Eastern Europe: challenges and ways forward from clinicians’ perspective. Haemophilia. 2015;21(5):e419–421. doi:10.1111/hae.12706
   Web of Science ®Google Scholar
• Mahony BO, Savini L, Hara JO, Bok A. Haemophilia care in Europe – A survey of 37 countries. Haemophilia. 2017;23(4):e259–e266. doi:10.1111/hae.13263
   Web of Science ®Google Scholar