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Treating for stability: an ethnographic study of aspirations and limitations in haemophilia treatment in Europe Cover

Treating for stability: an ethnographic study of aspirations and limitations in haemophilia treatment in Europe

The Journal of Haemophilia Practice
Volume 7 (2020): Issue 1 (January 2020)
By: Thomas Hughes,  Mikkel Brok-Kristensen,  Yosha Gargeya,  Anne Mette Worsøe Lottrup,  Ask Bo Larsen,  Ana Torres-Ortuño,  Nicki Mackett and  John Stevens  
Open Access
|Dec 2020

Figures & Tables

Since the introduction of prophylaxis as a treatment for haemophilia, treatment goals have aimed at moving people with haemophilia (PwH) out of a ‘danger zone’ and into an experience of stability around their condition. As even more effective treatments become available, it may be time to move beyond this focus on treating for stability, toward more ambitious outcomes and possibilities for PwH.
Since the introduction of prophylaxis as a treatment for haemophilia, treatment goals have aimed at moving people with haemophilia (PwH) out of a ‘danger zone’ and into an experience of stability around their condition. As even more effective treatments become available, it may be time to move beyond this focus on treating for stability, toward more ambitious outcomes and possibilities for PwH.

Comparison of treatment regimen and outcomes reported by Irish and non-Irish participants

IRISH RESPONDENTSNON-IRISH RESPONDENTS
PwH on prophylaxis treatment and fully adherent12 out of 12100%28 out of 3975%
PwH who adapt their treatment regimen to physical activities8 out of 1266.6%12 out of 3930.8%
Non-inhibitor PwH who had a bleed in the last year*3 out of 1030%23 out of 3369.7%
PwH (or carers) who are generally adherent to prophylaxis treatment who worry about not being adequately protected**3 out of 1225%14 out of 3342.4%
DOI: https://doi.org/10.17225/jhp00169 | Journal eISSN: 2055-3390
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Language: English
Page range: 165 - 172
Published on: Dec 17, 2020
Published by: Haemnet Ltd
In partnership with: Paradigm Publishing Services
Publication frequency: 1 issue per year
Keywords:
treatment goals,
haemophilia,
metrics of success,
flexible treatment,
annual bleed rate,
ethnography
Related subjects:
Medicine,
Basic medical science,
Basic medical science, other,
Clinical medicine,
Clinical medicine, other,
Pharmacy,
Pharmacology

© 2020 Thomas Hughes, Mikkel Brok-Kristensen, Yosha Gargeya, Anne Mette Worsøe Lottrup, Ask Bo Larsen, Ana Torres-Ortuño, Nicki Mackett, John Stevens, published by Haemnet Ltd
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

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