The benefits of prophylaxis: views of adolescents with severe haemophilia

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 regimen...

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Bibliographic Details
Published in:Haemophilia : the official journal of the World Federation of Hemophilia 2012-05, Vol.18 (3), p.e286-e289
Main Authors: KHAIR, K., GIBSON, F., MEERABEAU, L.
Format: Article
Language:English
Subjects:
adherence
adolescence
Adolescent
Attitude to Health
children and young people
Coagulants - administration & dosage
Cross-Sectional Studies
Drug Administration Schedule
Factor V - administration & dosage
haemophilia treatment
Hemophilia A - drug therapy
Hemophilia A - psychology
Hemophilia B - drug therapy
Hemophilia B - psychology
Humans
Male
Medication Adherence - psychology
prophylaxis
Qualitative Research
Quality of Life
United Kingdom
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Summary: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 multi‐method, 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.
ISSN:1351-8216
1365-2516
DOI:10.1111/j.1365-2516.2011.02644.x