Health-related quality of life and its associated factors among hemophilia patients: experience from Ethiopian Hemophilia Treatment Centre

Srivastava A. Uncertain times for research on hemophilia and allied disorders. J Thromb Haemost. 2006;4:680.

Article  CAS  PubMed  Google Scholar 

Iorio A, Stonebraker JS, Chambost H, et al. Establishing the prevalence and prevalence at birth of hemophilia in males a meta-analytic approach using national registries. Ann Intern Med. 2019;171:542–6.

Article  Google Scholar 

Café A, Carvalho M, Crato M, Faria M, Kjollerstrom P, Oliveira C, Pinto PR, Salvado R, Aires A, Silva C. Haemophilia A : health and economic burden of a rare disease in Portugal. 2019;5:1–11.

Michael Soucie J. Global hemophilia care: Data for action. Ann Intern Med. 2019;171:585–6.

Article  PubMed  Google Scholar 

Knobe K, Berntorp E. Haemophilia and Joint Disease: Pathophysiology, Evaluation, and Management. J Comorbidity. 2011;1:51–9.

Article  Google Scholar 

O’Hara J, Walsh S, Camp C, Mazza G, Carroll L, Hoxer C, Wilkinson L. The impact of severe haemophilia and the presence of target joints on health-related quality-of-life. Health Qual Life Outcomes. 2018;16:1–8.

Article  Google Scholar 

Osooli M, Steen Carlsson K, Baghaei F, Holmström M, Rauchensteiner S, Holme PA, Hvitfeldt L, Astermark J, Berntorp E. The association between health utility and joint status among people with severe haemophilia A: findings from the KAPPA register. Haemophilia. 2017;23:e180–7.

Article  CAS  PubMed  Google Scholar 

The WHOQOL Group. WHO Quality of Life Scale (WHOQOL). Psychol Med. 1998;28:551–8.

Article  Google Scholar 

Singh R, Dixit S. Health-related quality of life and health management. J Health Manag. 2010;12:153–72.

Article  Google Scholar 

Kaplan RM, Hays RD. Health-Related Quality of Life Measurement in Public Health. Annu Rev Public Health. 2022;43:355–73.

Article  PubMed  Google Scholar 

Chen H, Taichman DB, Doyle RL. Health-related quality of life and patient-reported outcomes in pulmonary arterial hypertension. Proc Am Thorac Soc. 2008;5:623–30.

Article  PubMed  PubMed Central  Google Scholar 

Scalone L, Mantovani LG, Mannucci PM, et al. Quality of life is associated to the orthopaedic status in haemophilic patients with inhibitors. Haemophilia. 2006;12:154–62.

Article  CAS  PubMed  Google Scholar 

Rambod M, Sharif F, Molazem Z, Khair K, von Mackensen S. Health-Related Quality of Life and Psychological Aspects of Adults With Hemophilia in Iran. Clin Appl Thromb. 2018;24:1073–81.

Article  Google Scholar 

Baek HJ, Park YS, Yoo KY, Cha JH, Kim YJ, Lee KS. Health-related quality of life of moderate and severe haemophilia patients: Results of the haemophilia-specific quality of life index in Korea. PLoS ONE. 2020;15:1–12.

Article  Google Scholar 

Srivastava A, Santagostino E, Dougall A, et al. WFH Guidelines for the Management of Hemophilia, 3rd edition. Haemophilia. 2020;26:1–158.

Article  PubMed  Google Scholar 

Ferreira AA, Leite ICG, Bustamante-Teixeira MT, Corrêa CSL, da Cruz DT, Rodrigues D de OW, Ferreira MCB. Health-related quality of life in hemophilia: Results of the Hemophilia-Specific Quality of Life Index (Haem-a-Qol) at a Brazilian blood center. Rev Bras Hematol Hemoter. 2013;35:314–8.

Article  PubMed  PubMed Central  Google Scholar 

Niu J, Ning L, Zhang Q, Liu Z, Ma Y, Xu X, Wu Q, Hao Y, Cui Y, Liu C. Health-related quality of life of patients with haemophilia: A cross-sectional survey in the Northeast of China. BMJ Open. 2022;12:1–9.

Article  Google Scholar 

Carroll L, Benson G, Lambert J, Benmedjahed K, Zak M, Lee XY. Real-world utilities and health-related quality-oflife data in hemophilia patients in France and the United Kingdom. Patient Prefer Adherence. 2019;13:941–57.

Article  PubMed  PubMed Central  Google Scholar 

Fischer K, van der Bom JG, Mauser-Bunschoten EP, Roosendaal G, van den Berg HM. Effects of haemophilic arthropathy on health-related quality of life and socio-economic parameters. Haemophilia. 2005;11:43–8.

Article  CAS  PubMed  Google Scholar 

Molho P, Rolland N, Lebrun T, Dirat G, Courpied JP, Croughs T, Duprat I, Sultan Y. Epidemiological survey of the orthopaedic status of severe haemophilia A and B patients in France. Haemophilia. 2000;6:23–32.

Article  CAS  PubMed  Google Scholar 

Brown TM, Lee WC, Joshi AV, Pashos CL. Health-related quality of life and productivity impact in haemophilia patients with inhibitors. Haemophilia. 2009;15:911–7.

Article  CAS  PubMed  Google Scholar 

Duncan N, Shapiro A, Ye X, Epstein J, Luo MP. Treatment patterns, health-related quality of life and adherence to prophylaxis among haemophilia A patients in the United States. Haemophilia. 2012;18:760–5.

Article  CAS  PubMed  Google Scholar 

Taha MY, Hassan MK. Health-related quality of life in children and adolescents with hemophilia in Basra, Southern Iraq. J Pediatr Hematol Oncol. 2014;36:179–84.

Article  PubMed  Google Scholar 

Oladapo AO, Epstein JD, Williams E, Ito D, Gringeri A, Valentino LA. Health-related quality of life assessment in haemophilia patients on prophylaxis therapy: A systematic review of results from prospective clinical trials. Haemophilia. 2015;21:e344–58.

Article  CAS  PubMed  Google Scholar 

Power MJ, Green AM. Development of the WHOQOL disabilities module. Qual Life Res. 2010;19:571–84.

Article  CAS  PubMed  Google Scholar 

Lins L, Carvalho FM. SF-36 total score as a single measure of health-related quality of life: Scoping review. SAGE Open Med. 2016;4:205031211667172.

Article  Google Scholar 

EuroQol - a new facility for the measurement of health-related quality of life. Health Policy (New York). 1990;16:199–208.

Pennington B, Hernandez-Alava M, Pudney S, Wailoo A. The Impact of Moving from EQ-5D-3L to -5L in NICE Technology Appraisals. Pharmacoeconomics. 2019;37:75–84.

Article  PubMed  Google Scholar 

Tito K, Gebremariam GT, Beyene K, Sander B, Gebretekle GB. Health-related quality of life and treatment satisfaction of patients with cardiovascular disease in Ethiopia. Front Public Heal. 2022. https://doi.org/10.3389/fpubh.2022.972378.

Article  Google Scholar 

Whitehead SJ, Ali S. Health outcomes in economic evaluation: the QALY and utilities. Br Med Bull. 2010;96:5–21.

Welie AG, Gebretekle GB, Stolk E, Mukuria C, Krahn MD, Enquoselassie F, Fenta TG. Valuing Health State: An EQ-5D-5L Value Set for Ethiopians. Value Heal Reg Issues. 2020;22:7–14.

Article  Google Scholar 

Mahlangu J, Oldenburg J, Callaghan MU, et al. Health-related quality of life and health status in persons with haemophilia A with inhibitors: A prospective, multicentre, non-interventional study (NIS). Haemophilia. 2019;25:382–91.

Article  CAS  PubMed  PubMed Central  Google Scholar 

Xu RH, Dong D, Luo N, Wong ELY, Yang R, Liu J, Yuan H, Zhang S. Mapping the Haem-A-QoL to the EQ-5D-5L in patients with hemophilia. Qual Life Res. 2022;31:1533–44.

Article  PubMed  Google Scholar 

Zhang H, Huang J, Kong X, Ma G, Fang Y. Health-related quality of life in children with haemophilia in China: A 4-year follow-up prospective cohort study. Health Qual Life Outcomes. 2019;17:1–8.

Article  Google Scholar 

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