Living with an inhibitor: Results from the Study of Haemophilia Experiences, Results and Opportunities in Children and young adults with long-standing inhibitors (the SO-HEROIC study)
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Collins PW, Palmer BP, Chalmers EA, et al; UK Haemophilia Centre Doctors’ Organisation. Factor VIII brand and the incidence of factor VIII inhibitors in previously untreated UK children with severe hemophilia A, 2000-2011. Blood 2014; 124: 3389-97.CollinsPWPalmerBPChalmersEAet alUK Haemophilia Centre Doctors’ Organisation. Factor VIII brand and the incidence of factor VIII inhibitors in previously untreated UK children with severe hemophilia A, 2000-2011201412433899710.1182/blood-2014-07-580498424603725339360Search in Google Scholar
Peyvandi F, Mannucci PM, Garagiola I, et al. A randomized trial of factor VIII and neutralizing antibodies in hemophilia A. N Engl J Med 2016; 374: 2054-64.PeyvandiFMannucciPMGaragiolaIet alA randomized trial of factor VIII and neutralizing antibodies in hemophilia A201637420546410.1056/NEJMoa151643727223147Search in Google Scholar
Collins P, Chalmers E, Alamelu J, et al. First-line immune tolerance induction for children with severe haemophilia A: a protocol from the UK Haemophilia Centre Doctors' Organisation Inhibitor and Paediatric Working Parties. Haemophilia 2017 Sep;23(5):654-9. doi: 10.1111/hae.13264.CollinsPChalmersEAlameluJet alFirst-line immune tolerance induction for children with severe haemophilia A: a protocol from the UK Haemophilia Centre Doctors' Organisation Inhibitor and Paediatric Working Parties2017Sep235654910.1111/hae.1326428574205Open DOISearch in Google Scholar
Dekoven M, Wisniewski T, Petrilla A, et al. Health-related quality of life in haemophilia patients with inhibitors and their caregivers. Haemophilia 2013; 19: 287-93.DekovenMWisniewskiTPetrillaAet alHealth-related quality of life in haemophilia patients with inhibitors and their caregivers2013192879310.1111/hae.1201923005698Search in Google Scholar
DeKoven M, Karkare S, Lee WC, et al. Impact of haemophilia with inhibitors on caregiver burden in the United States. Haemophilia 2014; 20: 822-30.DeKovenMKarkareSLeeWCet alImpact of haemophilia with inhibitors on caregiver burden in the United States2014208223010.1111/hae.1250125273645Search in Google Scholar
Lindvall K, von Mackensen S, Elmståhl S, et al. Increased burden on caregivers of having a child with haemophilia complicated by inhibitors. Pediatr Blood Cancer 2014 Apr;61(4):706-11. doi: 10.1002/pbc.24856.LindvallKvon MackensenSElmståhlSet alIncreased burden on caregivers of having a child with haemophilia complicated by inhibitors2014Apr6147061110.1002/pbc.2485624277475Open DOISearch in Google Scholar
Neufeld EJ, Recht M, Sabio H. 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: 916-25.NeufeldEJRechtMSabioHEffect 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 hemophilia2012159162510.1016/j.jval.2012.05.00522999142Search in Google Scholar
Recht M, Neufeld EJ, Sharma VR, et al. Impact of acute bleeding on daily activities of patients with congenital hemophilia with inhibitors and their caregivers and families: observations from the Dosing Observational Study in Hemophilia (DOSE). Value Health 2014; 17: 744-8.RechtMNeufeldEJSharmaVRet alImpact of acute bleeding on daily activities of patients with congenital hemophilia with inhibitors and their caregivers and families: observations from the Dosing Observational Study in Hemophilia (DOSE)201417744810.1016/j.jval.2014.07.00325236999Search in Google Scholar
duTreil S. Physical and psychosocial challenges in adult hemophilia patients with inhibitors. J Blood Med 2014; 5: 115-22.duTreilSPhysical and psychosocial challenges in adult hemophilia patients with inhibitors201451152210.2147/JBM.S63265411490725093002Search in Google Scholar
Hermans C, Auerswald G, Benson G. Outcome measures for adult and pediatric hemophilia patients with inhibitors. Eur J Haematol 2017; 99: 103-11.HermansCAuerswaldGBensonGOutcome measures for adult and pediatric hemophilia patients with inhibitors2017991031110.1111/ejh.1288128332238Search in Google Scholar
Young G. Transitioning issues in adolescent to young adult hemophilia patients with inhibitors: an approach for a growing population. Blood Coagul Fibrinolysis 2010; 21 Suppl 1: S7-10.YoungGTransitioning issues in adolescent to young adult hemophilia patients with inhibitors: an approach for a growing population201021 Suppl1S71010.1097/01.mbc.0000388936.54741.3820855989Search in Google Scholar
Phillott A, Khair K, Loran C, et al. HaemophiliaLIVE: an ethnographic study on the impact of haemophilia on daily life. J Haem Pract 2014; 1(3): 14-20. doi: 10.17225/jhp00030.PhillottAKhairKLoranCet alHaemophiliaLIVE: an ethnographic study on the impact of haemophilia on daily life201413142010.17225/jhp00030Open DOISearch in Google Scholar
Charmaz K. ‘Discovering’ chronic illness: using grounded theory. Soc Sci Med 1990; 30 (11): 1161-72.CharmazK.‘Discovering’ chronic illness: using grounded theory1990301111617210.1016/0277-9536(90)90256-RSearch in Google Scholar
Morfini M, Auerswald G, Kobelt RA,et al. Prophylactic treatment of haemophilia patients with inhibitors: clinical experience with recombinant factor VIIa in European Haemophilia Centres. Haemophilia 2007 Sep; 13(5): 502-7.MorfiniMAuerswaldGKobeltRAet alProphylactic treatment of haemophilia patients with inhibitors: clinical experience with recombinant factor VIIa in European Haemophilia Centres2007Sep;135502710.1111/j.1365-2516.2007.01455.x17880436Search in Google Scholar
Negrier C, Voisin S, Baghaei F, et al; FEIBA PASS Study Group. Global Post-Authorization Safety Surveillance Study: real-world data on prophylaxis and on-demand treatment using FEIBA (an activated prothrombin complex concentrate). Blood Coagul Fibrinolysis 2016 Jul; 27(5): 551–6.NegrierCVoisinSBaghaeiFet alFEIBA PASS Study Group. Global Post-Authorization Safety Surveillance Study: real-world data on prophylaxis and on-demand treatment using FEIBA (an activated prothrombin complex concentrate)2016Jul275551610.1097/MBC.0000000000000525493553826829366Search in Google Scholar
Young G, Escober MA, Pipe SW, Cooper DL. Safety and efficacy of recombinant activated coagulation factor VII in congenital hemophilia with inhibitors in the home treatment setting: a review of clinical studies and registries. Am J Hematol 2017 Sep:92 (9): 940-5.YoungGEscoberMAPipeSWCooperDLSafety and efficacy of recombinant activated coagulation factor VII in congenital hemophilia with inhibitors in the home treatment setting: a review of clinical studies and registries2017Sep929940510.1002/ajh.2481128589615Search in Google Scholar
Duncan N, Kronenberger W, Roberson C, Shapiro A. VERITASPro: a new measure of adherence to prophylactic regimens in haemophilia. Haemophilia 2010; 20(1): 39-43.DuncanNKronenbergerWRobersonCShapiroAVERITASPro: a new measure of adherence to prophylactic regimens in haemophilia20102013943Search in 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 Jan 19; 12(1): e0169880. doi: 10.1371/journal.pone.0169880.Van OsSBTroopNASullivanKRHartDPAdherence to prophylaxis in adolescents and young adults with severe haemophilia: a quantitative study with patients2017Jan 19;121e016988010.1371/journal.pone.0169880524586028103266Open DOISearch in Google Scholar
Young G. Transitioning issues in adolescent to young adult hemophilia patients with inhibitors: an approach for a growing population. Blood Coag and Fibrinolysis 2010; 21 (Suppl 1): S7-10.YoungGTransitioning issues in adolescent to young adult hemophilia patients with inhibitors: an approach for a growing population201021Suppl 1S71010.1097/01.mbc.0000388936.54741.38Search in Google Scholar
Khair K, Holland M, Bladen M, et al; SO-FIT Study Group. Study of physical function in adolescents with haemophilia: the SO-FIT study. Haemophilia 2017 Nov; 23(6): 918-25. doi: 10.1111/ hae.13323.KhairKHollandMBladenMet alSO-FIT Study Group. Study of physical function in adolescents with haemophilia: the SO-FIT study2017Nov;2369182510.1111/hae.1332328806864Open DOISearch in Google Scholar
Poti S, Palareti L, Emiliani F, Rodorigo G, Valdre 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. International Journal of Adolescence and Youth 2017. doi: 10.1080/02673843.2017.1299017.PotiSPalaretiLEmilianiFRodorigoGValdreLThe subjective experience of living with haemophilia in the transition from early adolescence to young adulthood: the effect of age and the therapeutic regimen201710.1080/02673843.2017.1299017Open DOISearch in Google Scholar
Palareti L, Poti S, Cassis F, Emiliani F, Mayino D, Iorio A. Shared topics on the experience of people with haemophilia living in the UK and the USA and the influence of individual and contextual variables: results from the HERO qualitative study. Int J Qual Stud Health Well-being 2015; 10:28915. doi: 10.3402/qhw.v10.28915.PalaretiLPotiSCassisFEmilianiFMayinoDIorioAShared topics on the experience of people with haemophilia living in the UK and the USA and the influence of individual and contextual variables: results from the HERO qualitative study2015102891510.3402/qhw.v10.28915Open DOISearch in Google Scholar
Khair K, Gibson F, Meerabeau L. ‘I can always rely on them’: the importance of social support for boys with haemophilia. J Haem Pract 2014; 1(1): 10-16. doi: 10.17225/jhp00005.KhairKGibsonFMeerabeauL.‘I can always rely on them’: the importance of social support for boys with haemophilia201411101610.17225/jhp00005Open DOISearch in Google Scholar
Limperg P, Peters M, Gibbons E, et al. Themes in daily life of adolescents and young adults with congenital bleeding disorders: a qualitative study. Haemophilia 2016; 22(4): e330-3. doi: 10.1111/hae.12961.LimpergPPetersMGibbonsEet alThemes in daily life of adolescents and young adults with congenital bleeding disorders: a qualitative study2016224e330310.1111/hae.12961Open DOISearch in Google Scholar
Garrino LE, Picco I, Fniguerra D, Rossi P, Roccatello D. Living with and treating rare diseases: experience of patients and professional health care providers. Qual Health Res 2015; 25(5): 636-51. doi: 10.1177/1049732315570116.GarrinoLEPiccoIFniguerraDRossiPRoccatelloDLiving with and treating rare diseases: experience of patients and professional health care providers20152556365110.1177/1049732315570116Open DOISearch in Google Scholar
Brand B, Dunn S, Kulkarni R. Challenges in the management of haemophilia on transition from adolescence to adulthood. Eur J Haematol 2015 Dec;95 Suppl 81: 30-5. doi: 10.1111/ ejh.12582.BrandBDunnSKulkarniRChallenges in the management of haemophilia on transition from adolescence to adulthood2015Dec;95 Suppl8130510.1111/ejh.12582Open DOISearch in Google Scholar
Khair K, Holland M, Carrington S. Social networking for adolescents with severe haemophilia. Haemophilia 2012 May; 18(3): e290-6. doi: 10.1111/j.1365-2516.2011.02689.x.KhairKHollandMCarringtonSSocial networking for adolescents with severe haemophilia2012May;183e290610.1111/j.1365-2516.2011.02689.xOpen DOISearch in Google Scholar
European Haemophilia Consortium. The European Inhibitor Network. Available from https://inhibitor.ehc.eu (accessed 28 January 2018).Available fromhttps://inhibitor.ehc.euaccessed 28 January2018Search in Google Scholar
Lincoln YS, Garuba EG. Naturalistic Inquiry Newbury Park, Ca: SAGE; 1985.LincolnYSGarubaEGNewbury Park, CaSAGE198510.1016/0147-1767(85)90062-8Search in Google Scholar