1. Sharma A, Easow Mathew M, Sriganesh V, Reiss UM. Gene therapy for haemophilia. Cochrane Database Syst Rev. 2020;4(4):Cd010822. doi:10. 1002/14651858.CD010822.pub4
2. Reding MT, Pabinger I, Lalezari S, Santagostino E, Mancuso ME. Target joint resolution in patients with haemophilia A receiving long-term prophylaxis with BAY 94-9027. Haemophilia. 2020;26(4):e201-e204. doi:10.1111/hae.13982
3. Hermans C, Noone D, Benson G, et al. Hemophilia treatment in 2021: choosing the”optimal” treatment using an integrative, patient-oriented approach to shared decision-making between patients and clinicians. Blood Rev. 2022;52:100890. doi:10.1016/j.blre.2021.100890
4. Rayment R, Chalmers E, Forsyth K, et al. Guidelines on the use of prophylactic factor replacement for children and adults with haemophilia A and B. Br J Haematol. 2020;190(5):684-695. doi:10.1111/bjh.16704
5. Hoefnagels JW, Schrijvers LH, Leebeek FWG, et al. Adherence to prophylaxis and its association with activation of self-management and treatment satisfaction. Haemophilia. 2021;27(4):581-590. doi:10.1111/hae.14333
6. 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
7. Aliaga-Castillo V, Horment-Lara G, Contreras-Sepúlveda F, Cruz-Montecinos C. Safety and effectiveness of telerehabilitation program in people with severe haemophilia in Chile. A qualitative study. Musculoskelet Sci Pract. 2022;60:102565. doi:10.1016/j.msksp.2022. 102565
8. Pitance V, Désage S, Lienhart A, Meunier S, Chamouard V. Haemophilia A patients’ medication adherence to prophylaxis with efmoroctocog alfa. Haemophilia. 2021;27(3):e368-e375. doi:10.1111/hae.14301
9. O’Donovan M, Buckley C, Benson J, et al. Telehealth for delivery of haemophilia comprehensive care during the COVID-19 pandemic. Haemophilia. 2020;26(6):984-990. doi:10.1111/hae.14156
10. Banchev A, Batorova A, Faganel Kotnik B, et al. A cross-national survey of people living with hemophilia: impact on daily living and patient education in central Europe. Patient Prefer Adherence. 2021;15:871-883. doi:10.2147/ppa.S303822
11. Parisi S, Lehner N, Schrader H, et al. Experiencing COVID-19, home isolation and primary health care: a mixed-methods study. Front Public Health. 2022;10:1023431. doi:10.3389/fpubh.2022.1023431
12. 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
13. Bhatt N, Boggio L, Simpson ML. Using an educational intervention to assess and improve disease-specific knowledge and health literacy and numeracy in adolescents and young adults with haemophilia A and B. Haemophilia. 2021;27(2):229-236. doi:10.1111/hae.14228
14. Mehrekula Demirci Z, Demiral Yilmaz N, Bulbul H, et al. Adherence to hemophilia patients with prophylaxis: Veritas-Pro and psychometric properties adapted to Turkish. PLoS One. 2023;18(8):e0288625. doi:10. 1371/journal.pone.0288625
15. Duncan N, Kronenberger W, Roberson C, Shapiro A. VERITAS-Pro: a new measure of adherence to prophylactic regimens in haemophilia. Haemophilia. 2010;16(2):247-255.
16. Mokhtar FM, Sathar J, Huri HZ. Medication adherence for haemophilia patients: outcome of prophylaxis treatment intervention. Healthcare (Basel). 2021;9(12):1702. doi:10.3390/healthcare9121702
17. Cheung YT, Lam PH, Lam HHW, et al. Treatment adherence and health-related quality of life in patients with hemophilia in Hong Kong. Int J Environ Res Public Health. 2022;19(11):6496.doi:10.3390/ijerph 19116496
18. Guasch S, Scott LC, Figueroa J, et al. Cross-sectional study evaluating the association of haemophilia-related distress and clinically relevant outcomes. Haemophilia. 2023;29(2):505-512. doi:10.1111/hae.14741
19. Bago M, Butkovic A, Preloznik Zupan I, et al. Association between reported medication adherence and health-related quality of life in adult patients with haemophilia. Int J Clin Pharm. 2021;43(6):1500-1507. doi:10.1007/s11096-021-01270-x
20. Zdziarska J, Górska-Kosicka M, Jamrozik M, et al. Adherence to prophylactic treatment in adult patients with severe hemophilia in Poland. Pol Arch Intern Med. 2022;132(7-8):16280. doi:10.20452/pamw. 16280
21. Hoefnagels JW, Fischer K, Bos RAT, Driessens MHE, Schrijvers LH. A tailored intervention for illness acceptance improves adherence and quality of life in adults with haemophilia using prophylaxis. Haemophilia. 2021;27(4):e434-e440. doi:10.1111/hae.14320
22. van Os S, Ryder N, Hart DP, Troop N. Adherence to prophylaxis in adolescents and young adults with severe haemophilia: a qualitative study with healthcare professionals. Health Psychol Behav Med. 2020; 8(1):55-72. doi:10.1080/21642850.2020.1718501
23. Liu Z, Feng J, Fang Y, Cheng Y, Li S. Barriers to prophylactic treatment among patients with haemophilia A in Shandong Province, China: a qualitative study. Orphanet J Rare Dis. 2023;18(1):226. doi:10.1186/s13023-023-02838-8
24. Sultan S, El-Hourani M, Rondeau É, Garnier N. Categorizing factors of adherence to parenteral treatment in growth hormone deficiencies and hemophilia: what should be the targets for future research? Patient Prefer Adherence. 2018;12:2039-2063. doi:10.2147/ppa.S177624
25. Thornburg CD, Duncan NA. Treatment adherence in hemophilia. Patient Prefer Adherence. 2017;11:1677-1686. doi:10.2147/ppa.S139851