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Sylvia von Mackensen, Karin Lindvall, Sölve Elmståhl and Erik Berntorp

. 7. Nilsson IM, Berntorp E, Lofqvist T, Pettersson H. Twenty-five years’ experience of prophylactic treatment in severe haemophilia A and B. J Intern Med 1992; 232(1): 25-32. 8. Lindvall K, Von Mackensen S, Berntorp E. Quality of life in adult patients with haemophilia--a single centre experience from Sweden. Haemophilia 2012; 18(4): 527-31. doi: 10.1111/j.1365-2516.2012.02765.x. 9. Larsson SA. Life expectancy of Swedish haemophiliacs, 1831-1980. Br J Haematol 1985; 59(4): 593-602. 10. Mauser-Bunschoten EP, Fransen

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Kate Khair and Steve Chaplin

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. 4 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. 5 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. 6 Lindvall K

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Anica Phillott

References 1 Weatherhall J, Barnes N, Brown C, Preaud, E. Future characteristics of bypassing agents to improve care of hemophilia inhibitor patients: an economic and healthrelated quality of life perspective. Pharmacoeconomics Outcomes Res 2011; 11: 411-414. 2 Hay CRM, Brown S, Collins PW, et al. The diagnosis and management of factor Vlll and lX inhibitors: a guideline from the United Kingdom Haemophilia Centre Doctors Organisation. Br J Haematol 2006; 133: 591-605. 3 Brown TM, Lee WC, Joshi AV, Pashos CL

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Kate Khair and Steve Chaplin

families with children affected by hemophilia. Qual Health Res 2011;21:1667-78. 8. Ergün S, Sülü E, Başbakkal Z. Supporting the need for home care by mothers of children with hemophilia. Home Healthc Nurse 2011;29:530-8. 9. 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. 10. DeKoven M, Karkare S, Lee WC, et al. Impact of haemophilia with inhibitors on caregiver burden in the United States. Haemophilia 2014

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Paul McLaughlin, Melanie Bladen, Mike Holland and Kate Khair

with severe haemophilia: a beneficial effect on orthopaedic outcome and quality of life. Eur J Haematol 2012; 88: 329S35. 16. Saulyte Trakymiene S, Ingerslev J, Rageliene L. Utility of the Haemophilia Joint Health Score in study of episodically treated boys with severe haemophilia A and B in Lithuania. Haemophilia 2010;16: 479S86. 17. van der Net J, Vos RC, Engelbert RH, et al. Physical fitness, functional ability and quality of life in children with severe haemophilia: a pilot study. Haemophilia. 2006;12: 494S9. 18

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Kate Khair, Anica Phillott, Christine Loran, Debra Pollard, Claire Forrester, Sharon Alavian and Susan Hook

, Fischer K, Heijnen L et al. Pain and functional limitations in patients with severe haemophilia. Haemophilia 2006; 12: 147W53. 6. Forsyth A, Guelcher C, Nugent D et al. Hemophilia Impacts Quality of Life UQoLV in Adult PWH at an Early Age, with Pain a Contributing Factor: US Results From the Hemophilia Experiences, Results and Opportunities UHEROV Study. Poster presented at National Hemophilia Foundation 64th Annual Meeting; Orlando, Florida; November 8T10, 2012. 7. Cassis FRMY, Querol F, Forsyth A et al. Psychosocial aspects of

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Łukasz Mokros, Jacek Koprowicz, Katarzyna Nowakowska-Domagała, Juliusz Rodak and Tadeusz Pietras

.3109/08039488.2015.1053519 12. Oginska H, Oginska-Bruchal K. Chronotype and personality factors of predisposition to seasonal affective disorder. Chronobiol Int [Internet]. 2014;31(4):523–31. Available from: http://www.ncbi.nlm.nih.gov/pubmed/24397301 13. Mokros Ł, Witusik A, Michalska J, Łężak W, Panek M, Nowakowska-Domagała K, et al. Sleep quality, chronotype, temperament and bipolar features as predictors of depressive symptoms among medical students. Chronobiol Int [Internet]. 2017;0(0):1–13. Available from: https://www.tandfonline.com/doi/full/10

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Kate Khair, Melanie Bladen and Michael Holland

questionnaire for the assessment of subjective physical performance in adult patients with haemophilia--the HEP-Test-Q. Haemophilia 2010; 16: 170-8. 13. von Mackensen S, Bullinger M; Haemo-QoL Group. Development and testing of an instrument to assess the Quality of Life of Children with Haemophilia in Europe (Haemo-QoL).Haemophilia 2004; 10 Suppl 1: 17-25. 14. Pollak E, Mühlan H, von Mackensen S, Bullinger M; HAEMO-QOL GROUP. The Haemo-QoL Index: developing a short measure for health-related quality of life assessment in children and

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Kate Khair and Sylvia Von Mackensen

. Haemophilia 2014; 20: 756-62. 10. Weidebusch S, Pollman H, Siegmund B, Muthny F. Quality of life, psychosocial strains and coping in parents of children with haemophilia. Haemophilia 2008; 14(5): 1014-22. 11. Von Mackensen S, Gringeri A. Quality of life in haemophilia. In: Preedy VR, Watson RR (eds). Handbook of Disease Burdens and Quality of Life Measures. Heidelberg: Springer; 2009. Vol 3, Chapter 12, 1895-920. 12. Von Mackensen S, Gringeri A. Quality of life in hemophilia. In: Lee CA, Berntop EE, Hoots WK (eds). Textbook of

Open access

Amit Nathwani

Abstract

In recent decades, few disorders have benefited more from scientific research than haemophilia. Those living with the condition have witnessed improved standards of care resulting in dramatic improvements in quality of life. The Katharine Dormandy Haemophilia Centre and Thrombosis Unit has made a proud contribution to this improvement in care.