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Berntorp E, Fischer K, Hart DP, et al. Haemophilia. Nat Rev Dis Primers 2021; 7(1): 45. doi: 10.1038/s41572-021-00278-x.BerntorpEFischerKHartDPHaemophiliaNat Rev Dis Primers2021714510.1038/s41572-021-00278-xOpen DOISearch in Google Scholar
Bolton-Maggs PH, Pasi KJ. Haemophilias A and B. Lancet 2003; 361(9371): 1801–1809. doi: 10.1016/S0140-6736(03)13405-8.Bolton-MaggsPHPasiKJHaemophilias A and BLancet200336193711801180910.1016/S0140-6736(03)13405-8Open DOISearch in Google Scholar
Morfini M, Haya S, Tagariello G, et al. European study on orthopaedic status of haemophilia patients with inhibitors. Haemophilia 2007; 13(5): 606–612. doi: 10.1111/j.1365-2516.2007.01518.x.MorfiniMHayaSTagarielloGEuropean study on orthopaedic status of haemophilia patients with inhibitorsHaemophilia200713560661210.1111/j.1365-2516.2007.01518.xOpen DOISearch in Google Scholar
Gringeri A, Mantovani LG, Scalone L, Mannucci PM. Cost of care and quality of life for patients with hemophilia complicated by inhibitors: the COCIS Study Group. Blood 2003; 102(7): 2358–2363. doi: 10.1182/blood-2003-03-0941.GringeriAMantovaniLGScaloneLMannucciPMCost of care and quality of life for patients with hemophilia complicated by inhibitors: the COCIS Study GroupBlood200310272358236310.1182/blood-2003-03-0941Open DOISearch in Google Scholar
Srivastava A, Santagostino E, Dougall A, et al. WFH guidelines for the management of hemophilia, 3rd edition. Haemophilia 2020; 26: 1–158. doi: 10.1111/hae.14046.SrivastavaASantagostinoEDougallAWFH guidelines for the management of hemophilia, 3rd editionHaemophilia202026115810.1111/hae.14046Open DOISearch in Google Scholar
Morfini M, Zanon E. Emerging drugs for the treatment of hemophilia A and B. Expert Opin Emerg Dr 2016; 21(3): 301–313. doi: 10.1080/14728214.2016.1220536.MorfiniMZanonEEmerging drugs for the treatment of hemophilia A and BExpert Opin Emerg Dr201621330131310.1080/14728214.2016.1220536Open DOISearch in Google Scholar
Blair HA. Emicizumab: a review in haemophilia A. Drugs 2019; 79(15): 1697–1707. doi: 10.1007/s40265-019-01200-2.BlairHAEmicizumab: a review in haemophilia ADrugs201979151697170710.1007/s40265-019-01200-2Open DOISearch in Google Scholar
Chamouard V, Freyssenge J, Duport G, et al. Evaluation of the care pathway in the context of the dispensing of emicizumab (Hemlibra) in community and hospital pharmacies in France: A patient satisfaction survey. Haemophilia 2023; 29(6): 1490–1498. doi: 10.1111/hae.14857.ChamouardVFreyssengeJDuportGEvaluation of the care pathway in the context of the dispensing of emicizumab (Hemlibra) in community and hospital pharmacies in France: A patient satisfaction surveyHaemophilia20232961490149810.1111/hae.14857Open DOISearch in Google Scholar
Hermans C, Makris M. Disruptive technology and hemophilia care: The multiple impacts of emicizumab. Res Pract Thromb Haemost 2021; 5(4): e12508. doi: 10.1002/rth2.12508.HermansCMakrisMDisruptive technology and hemophilia care: The multiple impacts of emicizumabRes Pract Thromb Haemost202154e1250810.1002/rth2.12508Open DOISearch in Google Scholar
Thornburg CD, Duncan NA. Treatment adherence in hemophilia. Patient Prefer Adherence 2017: 11: 1677–1686. doi: 10.2147/PPA.S139851.ThornburgCDDuncanNATreatment adherence in hemophiliaPatient Prefer Adherence2017111677168610.2147/PPA.S139851Open DOISearch in Google Scholar
Vidal. Hemophilia A: Hemlibra available in the city. 2021. Available from https://www.vidal.fr/actualites/27284-hemophilie-a-mise-a-disposition-en-ville-d-hemlibra.html (accessed March 2024).VidalHemophilia A: Hemlibra available in the city2021Available from https://www.vidal.fr/actualites/27284-hemophilie-a-mise-a-disposition-en-ville-d-hemlibra.html (accessed March 2024).Search in Google Scholar
Chamouard V, Fraticelli L, Freyssenge J, et al. Phareo study: Perceived and observed accessibility to therapeutic drugs used for treating patients with inherited bleeding disorders. J Clin Pharm Ther 2022; 47(10): 1667–1675. doi: 10.1111/jcpt.13718.ChamouardVFraticelliLFreyssengeJPhareo study: Perceived and observed accessibility to therapeutic drugs used for treating patients with inherited bleeding disordersJ Clin Pharm Ther202247101667167510.1111/jcpt.13718Open DOISearch in Google Scholar
Leroy V, Freyssenge J, Renard F, Tazarourte K, Négrier C, Chamouard V. Access to treatment among persons with hemophilia: a spatial analysis assessment in the Rhone-Alpes region, France. J Am Pharm Assoc 2019; 59(6): 797–803. doi: 10.1016/j.japh.2019.07.006.LeroyVFreyssengeJRenardFTazarourteKNégrierCChamouardVAccess to treatment among persons with hemophilia: a spatial analysis assessment in the Rhone-Alpes region, FranceJ Am Pharm Assoc201959679780310.1016/j.japh.2019.07.006Open DOISearch in Google Scholar
Frybourg S, Remuzat C, Kornfeld Å, Toumi M. Conflict of interest in Health Technology Assessment decisions: case law in France and impact on reimbursement decisions. J Mark Access Health Policy 2015; 3(1): 25682. doi: 10.3402/jmahp.v3.25682.FrybourgSRemuzatCKornfeldÅToumiMConflict of interest in Health Technology Assessment decisions: case law in France and impact on reimbursement decisionsJ Mark Access Health Policy2015312568210.3402/jmahp.v3.25682Open DOISearch in Google Scholar
Savage J. Ethnography and health care. Br Med J 2000; 321(7273): 1400–1402. doi: 10.1136/bmj.321.7273.1400.SavageJEthnography and health careBr Med J200032172731400140210.1136/bmj.321.7273.1400Open DOISearch in Google Scholar
Strudwick RM. Ethnographic research in healthcare – patients and service users as participants. Disabil Rehabil 2021; 43(22): 3271–3275. doi: 10.1080/09638288.2020.1741695.StrudwickRMEthnographic research in healthcare – patients and service users as participantsDisabil Rehabil202143223271327510.1080/09638288.2020.1741695Open DOISearch in Google Scholar
Grain Intelligence Inc. Grain. 2023. Available from https://grain.com/ (accessed 2023).Grain Intelligence Inc.Grain2023Available from https://grain.com/ (accessed 2023).Search in Google Scholar
QSR International. NVIVO. Version 14, 2023. Available from https://help-nv.qsrinternational.com/14/win/Content/about-nvivo/about-nvivo.htm (accessed April 2023).QSR InternationalNVIVO. Version 142023Available from https://help-nv.qsrinternational.com/14/win/Content/about-nvivo/about-nvivo.htm (accessed April 2023).Search in Google Scholar
Hughes T, Brok-Kristensen M, Gargeya Y, et al. Navigating uncertainty: an examination of how people with haemophilia understand and cope with uncertainty in protection in an ethnographic study. J Haem Pract 2020; 7(1): 158–164. doi: 10.17225/jhp00168.HughesTBrok-KristensenMGargeyaYNavigating uncertainty: an examination of how people with haemophilia understand and cope with uncertainty in protection in an ethnographic studyJ Haem Pract20207115816410.17225/jhp00168Open DOISearch in 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.HughesTBrok-KristensenMGargeyaY“What more can we ask for?”: an ethnographic study of challenges and possibilities for people living with haemophiliaJ Haem Pract202071253610.17225/jhp00151Open DOISearch in Google Scholar
Tischer B, Marino R, Napolitano M. Patient preferences in the treatment of hemophilia A: impact of storage conditions on product choice. Patient Prefer Adherence 2018; 12: 431–441. doi: 10.2147/PPA.S151812.TischerBMarinoRNapolitanoMPatient preferences in the treatment of hemophilia A: impact of storage conditions on product choicePatient Prefer Adherence20181243144110.2147/PPA.S151812Open DOISearch in Google Scholar
Fornari A, Antonazzo IC, Rocino A, et al. The psychosocial impact of haemophilia from patients’ and caregivers’ point of view: The results of an Italian survey. Haemophilia 2024; 30(2): 449–462. doi: 10.1111/hae.14926.FornariAAntonazzoICRocinoAThe psychosocial impact of haemophilia from patients’ and caregivers’ point of view: The results of an Italian surveyHaemophilia202430244946210.1111/hae.14926Open DOISearch in Google Scholar
Wiley RE, Khoury CP, Snihur AW, et al. From the voices of people with haemophilia A and their caregivers: challenges with current treatment, their impact on quality of life and desired improvements in future therapies. Haemophilia 2019; 25(3): 433–440. doi: 10.1111/hae.13754.WileyREKhouryCPSnihurAWFrom the voices of people with haemophilia A and their caregivers: challenges with current treatment, their impact on quality of life and desired improvements in future therapiesHaemophilia201925343344010.1111/hae.13754Open DOISearch in Google Scholar
Garcia VC, Mansfield C, Pierce A, Leach C, Smith JC, Afonso M. Patient and caregiver preferences for haemophilia treatments: A discrete-choice experiment. Haemophilia 2024; 30(2): 375–387. doi: 10.1111/hae.14928.GarciaVCMansfieldCPierceALeachCSmithJCAfonsoMPatient and caregiver preferences for haemophilia treatments: A discrete-choice experimentHaemophilia202430237538710.1111/hae.14928Open DOISearch in Google Scholar
von der Lippe C, Frich JC, Harris A, Solbrække KN. Treatment of hemophilia: a qualitative study of mothers’ perspectives. Pediatric Blood Cancer 2017; 64(1): 121–127. doi: 10.1002/pbc.26167.von der LippeCFrichJCHarrisASolbrækkeKNTreatment of hemophilia: a qualitative study of mothers’ perspectivesPediatric Blood Cancer201764112112710.1002/pbc.26167Open DOISearch in Google Scholar
Ballmann J, Ewers M. Nurse-led education of people with bleeding disorders and their caregivers: A scoping review. Haemophilia 2022; 28(6): e153–e163. doi: 10.1111/hae.14629.BallmannJEwersMNurse-led education of people with bleeding disorders and their caregivers: A scoping reviewHaemophilia2022286e153e16310.1111/hae.14629Open DOISearch in Google Scholar
Schrijvers L, Bedford M, Elfvinge P, Andritschke K, Leenders B, Harrington C. The role of the European haemophilia nurse. J Haem Pract 2014; 1(1): 24–27. doi: 10.17225/jhp.00008.SchrijversLBedfordMElfvingePAndritschkeKLeendersBHarringtonCThe role of the European haemophilia nurseJ Haem Pract201411242710.17225/jhp.00008Open DOISearch in Google Scholar
Hermans C, Pierce GF. Towards achieving a haemophilia-free mind. Haemophilia 2023; 29(4): 951–953. doi: 10.1111/hae.14807.HermansCPierceGFTowards achieving a haemophilia-free mindHaemophilia202329495195310.1111/hae.14807Open DOISearch in Google Scholar
Hughes T, Brok-Kristensen M, Gargeya Y, et al. “He’s a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia care. J Haem Pract 2020; 7(1): 150–157. doi: 10.17225/jhp00167.HughesTBrok-KristensenMGargeyaY“He’s a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia careJ Haem Pract20207115015710.17225/jhp00167Open DOISearch in Google Scholar
Mannucci P. AIDS, hepatitis and hemophilia in the 1980s: memoirs from an insider. J Thromb Haemost 2003; 1(10): 2065–2069. doi: 10.1046/j.1538-7836.2003.00483.x.MannucciPAIDS, hepatitis and hemophilia in the 1980s: memoirs from an insiderJ Thromb Haemost20031102065206910.1046/j.1538-7836.2003.00483.xOpen DOISearch in Google Scholar
Potì S, Palareti L, Emiliani F, Rodorigo G, Valdrè L. The subjective experience of living with haemophilia in the transition from early adolescence to young adulthood: the effect of age and the therapeutic regimen. Int J Adolesc Youth 2018; 23(2): 133–144. doi: 10.1080/02673843.2017.1299017.PotìSPalaretiLEmilianiFRodorigoGValdrèLThe subjective experience of living with haemophilia in the transition from early adolescence to young adulthood: the effect of age and the therapeutic regimenInt J Adolesc Youth201823213314410.1080/02673843.2017.1299017Open DOISearch in Google Scholar
duTreil S. Physical and psychosocial challenges in adult hemophilia patients with inhibitors. J Blood Med 2014: 5: 115–122. doi: 10.2147/JBM.S63265.duTreilSPhysical and psychosocial challenges in adult hemophilia patients with inhibitorsJ Blood Med2014511512210.2147/JBM.S63265Open DOISearch in Google Scholar
Recht M, Konkle B, Jackson S, Neufeld E, Rockwood K, Pipe S. Recognizing the need for personalization of haemophilia patient-reported outcomes in the prophylaxis era. Haemophilia 2016; 22(6): 825–832. doi: 10.1111/hae.13066.RechtMKonkleBJacksonSNeufeldERockwoodKPipeSRecognizing the need for personalization of haemophilia patient-reported outcomes in the prophylaxis eraHaemophilia201622682583210.1111/hae.13066Open DOISearch in Google Scholar
Krumb E, Hermans C. Living with a “hemophilia-free mind” – The new ambition of hemophilia care? Res Pract Thromb Haemost 2021; 5(5): e12567. doi: 10.1002/rth2.12567.KrumbEHermansCLiving with a “hemophilia-free mind” – The new ambition of hemophilia care?Res Pract Thromb Haemost202155e1256710.1002/rth2.12567Open DOISearch in Google Scholar
Forsyth A, 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.12239.ForsythAGregoryMNugentDHaemophilia Experiences, Results and Opportunities (HERO) Study: survey methodology and population demographicsHaemophilia2014201445110.1111/hae.12239Open DOISearch in Google Scholar
Goodson L, Vassar M. An overview of ethnography in healthcare and medical education research. J Educ Eval Health Prof 2011; 8: 4. doi: 10.3352/jeehp.2011.8.4.GoodsonLVassarMAn overview of ethnography in healthcare and medical education researchJ Educ Eval Health Prof20118410.3352/jeehp.2011.8.4Open DOISearch in Google Scholar