This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
Elander J, Barry T: Analgesic use and pain copings among patients with hemophilia. Haemophilia 2003, 9:202-1. doi: 10.1046/j.1365-2516.2003.00723.xElanderJBarryT:Analgesic use and pain copings among patients with hemophilia.2003,9:202-1. doi:10.1046/j.1365-2516.2003.00723.xOpen DOISearch in Google Scholar
Santavirta N, Bjorvell H, Solovieva S, Alaranta H, Hurskainen K, Konttinen Y. Coping strategies, pain, and disability in patients with hemophilia and related disorders. Arthritis Rheum 2001; 45:48-55. doi: 10.1002/1529-0131(200102)45:1<48::AID-ANR83>3.0.CO;2-1.SantavirtaNBjorvellHSolovievaSAlarantaHHurskainenKKonttinenY.Coping strategies, pain, and disability in patients with hemophilia and related disorders.2001;45:48-55. doi:10.1002/1529-0131(200102)45:1<48::AID-ANR83>3.0.CO;2-1.Open DOISearch in Google Scholar
Srivastava A, Santagostino E, Dougall A, et al. WFH Guidelines for the Management of Haemophilia, 3rd edition. Haemophilia 2020; 26(Suppl 6): 1-158. doi: 10.1111/hae.14046.SrivastavaASantagostinoEDougallA.WFH Guidelines for the Management of Haemophilia, 3rd edition.2020;26(Suppl 6):1-158. doi:10.1111/hae.14046.Open DOISearch in Google Scholar
Paredes AC, Teixeira P, Almeida A, Pinto PR. Prevalence and interference of chronic pain among people withhaemophilia: a systematic review and meta-analysis. J Pain 2021; 22(10): 1134-1145. doi:10.1016/j.pain.2021.03.157.ParedesACTeixeiraPAlmeidaAPintoPR.Prevalence and interference of chronic pain among people withhaemophilia: a systematic review and meta-analysis.2021;22(10):1134-1145. doi:10.1016/j.pain.2021.03.157.Open DOISearch in Google Scholar
Humphries TJ, Kessler C. Managing chronic pain in adults with haemophilia: current status and call to action. Haemophilia 2015; 21(1): 41-51. doi: 10.1111/hae.12526.HumphriesTJKesslerC.Managing chronic pain in adults with haemophilia: current status and call to action.2015;21(1):41-51. doi:10.1111/hae.12526.Open DOISearch in Google Scholar
Turk DC, Dworkin RH, Burke LB, et al. Developing patient-reported outcome measures for pain clinical trials: IMMPACT recommendations. Pain 2006; 125(3): 208-15. doi: 10.1016/j. pain.2006.09.028.TurkDCDworkinRHBurkeLB.Developing patient-reported outcome measures for pain clinical trials: IMMPACT recommendations.2006;125(3):208-15. doi:10.1016/j. pain.2006.09.028.Open DOISearch in Google Scholar
Khairoun C, Khorassani M, Kili A, Hssissen L, Kababri M, Khattab M. Pharmaco-economic study and cost of care for chronic diseases: Case of Haemophilia in Morocco. J Adv Pediatr Child Health 2020; 3: 024-026. doi: 10.29328/journal.japch.1001013.KhairounCKhorassaniMKiliAHssissenLKababriMKhattabM.Pharmaco-economic study and cost of care for chronic diseases: Case of Haemophilia in Morocco.2020;3:024-026. doi:10.29328/journal.japch.1001013.Open DOISearch in Google Scholar
World Federation of Hemophilia. Report on the Annual Global Survey 2021. October 2022. Available from https://www1.wfh.org/publications/files/pdf-2324.pdf (accessed 8 June 2023).World Federation of Hemophilia..October2022. Available from https://www1.wfh.org/publications/files/pdf-2324.pdf(accessed 8 June 2023).Search in Google Scholar
Khoubila N. Situation de la prise en charge des patients hémophiles au Maroc. Oral presentation, Congrès Magrébin d’hématologie, Algeria, 24-26 October 2019.KhoubilaN..Oral presentation, Congrès Magrébin d’hématologie,Algeria,24-26 October 2019.Search in Google Scholar
Pocoski J, Benjamin K, Michaels LA, Flood E, Sasane R. An overview of current trends and gaps in patient-reported outcome measures used in haemophilia. Eur J Haematol 2014; 93 (Suppl 75): 1-8. doi: 10.1111/ejh.12323.PocoskiJBenjaminKMichaelsLAFloodESasaneR.An overview of current trends and gaps in patient-reported outcome measures used in haemophilia.2014;93(Suppl 75):1-8. doi:10.1111/ejh.12323.Open DOISearch in Google Scholar
Paredes AC, Costa P, Almeida A, Pinto PR. A new measure to assess pain in people with haemophilia: The Multidimensional Haemophilia Pain Questionnaire (MHPQ). PLoS ONE 2018; 13(11): e0207939. doi: 10.1371/journal.pone.0207939.ParedesACCostaPAlmeidaAPintoPR.A new measure to assess pain in people with haemophilia: The Multidimensional Haemophilia Pain Questionnaire (MHPQ).2018;13(11):e0207939. doi:10.1371/journal.pone.0207939.Open DOISearch in Google Scholar
Dworkin RH, Turk DC, Farrar JT, et al. Core outcome measures for chronic pain clinical trials: IMMPACT recommendations. Pain 2005; 113(1-2): 9-19. doi: 10.1016/j.pain.2004.09.012.DworkinRHTurkDCFarrarJT.Core outcome measures for chronic pain clinical trials: IMMPACT recommendations.2005;113(1-2):9-19. doi:10.1016/j.pain.2004.09.012.Open DOISearch in Google Scholar
Ribeiro Pinto P, Paredes AC, Almeida A. Pain prevalence, characteristics, and impact among people with hemophilia: findings from the first Portuguese survey and implications for pain management. Pain Med 2020; 21(3): 458-471. doi: 10.1093/pm/pny309.Ribeiro PintoPParedesACAlmeidaA.Pain prevalence, characteristics, and impact among people with hemophilia: findings from the first Portuguese survey and implications for pain management.2020;21(3):458-471. doi:10.1093/pm/pny309.Open DOISearch in Google Scholar
Kalnins W, Schelle G, Jost K, et al.: Pain therapy in haemophilia in Germany, patient survey (BESTHstudy). Hamostaseologie 2015, 2:167-73. doi: 10.5482/HAMO-14-03-0021.KalninsWSchelleGJostK.:Pain therapy in haemophilia in Germany, patient survey (BESTHstudy).2015,2:167-73. doi:10.5482/HAMO-14-03-0021.Open DOISearch in Google Scholar
Stephensen D, Tait RC, Brodie N, et al. Changing patterns of bleeding in patients with severe haemophilia A. Haemophilia 2009; 15(6): 1210-1214. doi: 10.1111/j.1365-2516.2008.01876.x.StephensenDTaitRCBrodieN.Changing patterns of bleeding in patients with severe haemophilia A.2009;15(6):1210-1214. doi:10.1111/j.1365-2516.2008.01876.x.Open DOISearch in Google Scholar
Hmida J, Hilberg T, Ransmann P, et al. Most subjectively affected joints in patients with haemophilia – what has changed after 20 years in Germany? Haemophilia 2022; (4): 663-670. doi: 10.1111/hae.14564.HmidaJHilbergTRansmannP.Most subjectively affected joints in patients with haemophilia – what has changed after 20 years in Germany?2022; (4):663-670. doi:10.1111/hae.14564.Open DOISearch in Google Scholar
Payal V, Sharma P, Chhangani NP, Janu Y, Singh Y, Sharma A. Joint health status of hemophilia patients in Jodhpur region. Indian J Hematol Blood Transfus 2015; 31(3): 362-366. doi: 10.1007/s12288-014-0465-2.PayalVSharmaPChhanganiNPJanuYSinghYSharmaA.Joint health status of hemophilia patients in Jodhpur region.2015;31(3):362-366. doi:10.1007/s12288-014-0465-2.Open DOISearch in Google Scholar
Lambert C, Meité N, Sanogo I, et al. Haemophilia in Côte d’Ivoire (the Ivory Coast) in 2017: extensive data collection as part of the World Federation of Hemophilia’s twinning programme. Haemophilia 2019; 25(2): 236-243. doi: 10.1111/hae.13682.LambertCMeitéNSanogoI.Haemophilia in Côte d’Ivoire (the Ivory Coast) in 2017: extensive data collection as part of the World Federation of Hemophilia’s twinning programme.2019;25(2):236-243. doi:10.1111/hae.13682.Open DOISearch in Google Scholar
Auerswald G, Dolan G, Duffy A, et al. Pain and pain management in haemophilia. Blood Coagul Fibrinolysis 2016, 27: 845-54. doi: 10.1097/MBC.0000000000000571.AuerswaldGDolanGDuffyA.Pain and pain management in haemophilia.2016,27:845-54. doi:10.1097/MBC.0000000000000571.Open DOISearch in Google Scholar
Witkop M, Lambing A, Kachalsky E, et al. Assessment of acute and persistent pain management in patients with haemophilia. Haemophilia 2011; 17(4): 1-8. doi: 10.1111/j1365-2516.2010.02479.x.WitkopMLambingAKachalskyE.Assessment of acute and persistent pain management in patients with haemophilia.2011;17(4):1-8. doi:10.1111/j1365-2516.2010.02479.x.Open DOISearch in Google Scholar
Holstein K, Klamroth R, Richards M, et al. Pain management in patients with haemophilia: A European survey. Haemophilia 2012;18(5):743–52.HolsteinKKlamrothRRichardsM.Pain management in patients with haemophilia: A European survey.2012;18(5):743–52.Search in Google Scholar
McLaughlin P, Hurley M, Chowdary P, et al. The experiences and beliefs of people with severe haemophilia and healthcare professionals on pain management, and their views of using exercise as an intervention : a qualitative study. Disabil Rehabil 2022 ; 44(26) : 8420-9428. doi :10.1080/09638288.2021.2018054.McLaughlinPHurleyMChowdaryP.The experiences and beliefs of people with severe haemophilia and healthcare professionals on pain management, and their views of using exercise as an intervention : a qualitative study.2022;44(26) :8420-9428. doi :10.1080/09638288.2021.2018054.Open DOISearch in Google Scholar
Stromer W, Pabinger I, Ay C, et al. Pain management in hemophilia: expert recommendations. Wien Klin Wochenschr 2021; 133:1042-1056. doi: 10.1007/s00508-020-01798-4.StromerWPabingerIAyC.Pain management in hemophilia: expert recommendations.2021;133:1042-1056. doi:10.1007/s00508-020-01798-4.Open DOISearch in Google Scholar
González EL, Patrignani P, Tacconelli S, Rodríguez LA. Variability of risk of upper gastrointestinal bleeding among non-steroidal anti-inflammatory drugs. Arthritis Rheum 2010, 62: 1592-1601. doi: 10.1002/art.27412.GonzálezELPatrignaniPTacconelliSRodríguezLA.Variability of risk of upper gastrointestinal bleeding among non-steroidal anti-inflammatory drugs.2010,62:1592-1601. doi:10.1002/art.27412.Open DOISearch in Google Scholar
Rattray B, Nugent DJ, Young G. Celecoxib in the treatment of haemophilic synovitis, targetjoints, and pain in adults and children with haemophilia. Haemophilia 2006, 12: 514-7. doi: 10.1111/j.1365-2516.2006.01311.xRattrayBNugentDJYoungG.Celecoxib in the treatment of haemophilic synovitis, targetjoints, and pain in adults and children with haemophilia.2006,12:514-7. doi:10.1111/j.1365-2516.2006.01311.xOpen DOISearch in Google Scholar
Van Genderen FR, Fischer K, Heijnen L, et al. Pain and functional limitations in patients with severe haemophilia. Haemophilia 2006; 12: 147-53. doi: 10.1111/j.1365-2516.2006.01203.xVan GenderenFRFischerKHeijnenL.Pain and functional limitations in patients with severe haemophilia.2006;12:147-53. doi:10.1111/j.1365-2516.2006.01203.xOpen DOISearch in Google Scholar
Khair K, Kriukov J, Holland M. “It’s a way of life”: results from the Perceptions of Pain in Haemophilia study. J Haem Pract 2021; 8(1): 145-154. doi: 10.2478/jhp-2021-0020.KhairKKriukovJHollandM.“It’s a way of life”: results from the Perceptions of Pain in Haemophilia study.2021;8(1):145-154. doi:10.2478/jhp-2021-0020.Open DOISearch in Google Scholar
Santavirta N, Solovieva S, Helkama O, et al. Musculoskeletal pain and functional ability. Rheumatol Int 2001; 21: 15-9. doi: 10.1007/s002960100117.SantavirtaNSolovievaSHelkamaO.Musculoskeletal pain and functional ability.2001;21:15-9. doi:10.1007/s002960100117.Open DOISearch in Google Scholar
Young G, Tachdjian R, Baumann K, Panopoulos G. Comprehensive management of chronic pain in haemophilia. Haemophilia 2014;20(2):e113–20.YoungGTachdjianRBaumannKPanopoulosG.Comprehensive management of chronic pain in haemophilia.2014;20(2):e113–20.Search in Google Scholar
Blamey G, Forsyth A, Zourikian N, et al. Comprehensive elements of a physiotherapy exercise programme in haemophilia—a global perspective. Haemophilia 2010; 16 Suppl 5: 136-145. doi: 10.1111/j.1365-2516.2010.02312.x.BlameyGForsythAZourikianN.Comprehensive elements of a physiotherapy exercise programme in haemophilia—a global perspective.2010;16Suppl 5:136-145. doi:10.1111/j.1365-2516.2010.02312.x.Open DOISearch in Google Scholar
Rodriguez-Merchan EC: Prevention of the musculoskeletal complications of hemophilia. Adv Prev Med 2012, 2012: 201271. doi: 10.1155/2012/201271.Rodriguez-MerchanEC:Prevention of the musculoskeletal complications of hemophilia.2012,2012:201271. doi:10.1155/2012/201271.Open DOISearch in Google Scholar
Witkop M, Neff A, Buckner TW, et al. Self-reported prevalence, description and management of pain in adults with haemophilia: Methods, demographics and results from the Pain, Functional Impairment, and Quality of life (P-FiQ) study. Haemophilia 2017; 23(4): 556-65. doi: 10.1111/hae.13214.WitkopMNeffABucknerTW.Self-reported prevalence, description and management of pain in adults with haemophilia: Methods, demographics and results from the Pain, Functional Impairment, and Quality of life (P-FiQ) study.2017;23(4):556-65. doi:10.1111/hae.13214.Open DOISearch in Google Scholar
McLaughlin JM, Munn JE, Anderson TL, et al. Predictors of quality of life among adolescents and young adults with a bleeding disorder. Health Qual Life Outcomes 2017; 15(1): 15-67. doi: 10.1186/s12955-017-0643-7.McLaughlinJMMunnJEAndersonTL.Predictors of quality of life among adolescents and young adults with a bleeding disorder.2017;15(1):15-67. doi:10.1186/s12955-017-0643-7.Open DOISearch in Google Scholar
van Genderen FR, van Meeteren NL, Heijnen L, van den Berg HM, Helders PJ. The use of a disability model in haemophilia research. Haemophilia 2005; 11(5): 472-80. doi: 10.1111/j.1365-2516.2005.01135.x.van GenderenFRvan MeeterenNLHeijnenLvan den BergHMHeldersPJ.The use of a disability model in haemophilia research.2005;11(5):472-80. doi:10.1111/j.1365-2516.2005.01135.x.Open DOISearch in Google Scholar
Angelis A, Tordrup D, Kanavos P. Socio-economic burden of rare diseases: A systematic review of cost of illness evidence. Health Policy 2015; 119(7): 964-979. doi: 10.1016/j.healthpol.2014.12.016.AngelisATordrupDKanavosP.Socio-economic burden of rare diseases: A systematic review of cost of illness evidence.2015;119(7):964-979. doi:10.1016/j.healthpol.2014.12.016.Open DOISearch in Google Scholar
Naous E, de Moerloose P, Sleilaty G, et al. The impact of haemophilia on the social status and the health-related quality of life in adult Lebanese persons with haemophilia. Haemophilia 2019; 25(2): 264-269. doi: 10.1111/hae.13694.NaousEde MoerloosePSleilatyG.The impact of haemophilia on the social status and the health-related quality of life in adult Lebanese persons with haemophilia.2019;25(2):264-269. doi:10.1111/hae.13694.Open DOISearch in Google Scholar