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The benefits of prophylaxis: views of adolescents with severe haemophilia

The benefits of prophylaxis: views of adolescents with severe haemophilia

Khair, K., Gibson, F. and Meerabeau, L. (2012) The benefits of prophylaxis: views of adolescents with severe haemophilia. Haemophilia, 18 (3). e286-e289. ISSN 1365-2516 (Online) (doi:https://doi.org/10.1111/j.1365-2516.2011.02644.x)

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Abstract

It is well known and often reported that patients with long-term health conditions have problems adhering to treatment regimens. This is often reportedly worst in adolescents who struggle with the physical and psychological impact of adolescence as well as with the limitations that treatment regimens impose on their day to-day activities. This article presents results from a larger study that aimed to discover what living with haemophilia in the 21st century was like for boys with severe haemophilia. The overall study was a multimethod, cross-sectional interview based study of 30 boys with severe haemophilia, treated with prophylaxis at a single site in the UK. Although not specifically asked in the interview schedule, opinions about treatment (prophylaxis) were given by 66% of the boys. These boys recognized that prophylaxis offered them protection from bleeding, the older and more sporty boys understood the need for tailored prophylaxis around ‘risk’ activities such as sport or events away from home. For some boys this meant low dose daily prophylaxis, and this further enhanced treatment adherence, as it became firmly embedded in their daily ritual of health care. This study shows that adolescent boys are in fact adherent with treatment, possibly at a schedule decided upon by them rather than one directed by the haemophilia centre. They are able to comprehend complex treatment decisions and make treatment plans that offer them maximum protection with minimal interference in their day-to-day activities.

Item Type: Article
Additional Information: [1] Article first published online: 12 Sep 2011.
Uncontrolled Keywords: adherence, adolescence, children and young people, haemophilia treatment, prophylaxis
Subjects: R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
Pre-2014 Departments: School of Health & Social Care
Related URLs:
Last Modified: 14 Oct 2016 09:18
Selected for GREAT 2016: None
Selected for GREAT 2017: None
Selected for GREAT 2018: None
Selected for GREAT 2019: None
URI: http://gala.gre.ac.uk/id/eprint/7393

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