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

Thomas Hughes

Thomas Hughes

ReD AssociatesCopenhagen, Denmark
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Hughes, Thomas
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Mikkel Brok-Kristensen

Mikkel Brok-Kristensen

ReD AssociatesCopenhagen, Denmark
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Brok-Kristensen, Mikkel
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Yosha Gargeya

Yosha Gargeya

ReD AssociatesCopenhagen, Demnark
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Gargeya, Yosha
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Anne Mette Worsøe Lottrup

Anne Mette Worsøe Lottrup

ReD AssociatesCopenhagen, Denmark
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Worsøe Lottrup, Anne Mette
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Ask Bo Larsen

Ask Bo Larsen

ReD AssociatesCopenhagen, Denmark
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Bo Larsen, Ask
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Ana Torres-Ortuño

Ana Torres-Ortuño

University of MurciaSpain
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Torres-Ortuño, Ana
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Nicki Mackett

Nicki Mackett

Alder Hey Children's NHS Foundation TrustUK
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Mackett, Nicki
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John Stevens

John Stevens

Swedish Orphan Biovitrum AB (Sobi)Stockholm, Sweden
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Stevens, John
  
Dec 17, 2020
Treating for stability: an ethnographic study of aspirations and limitations in haemophilia treatment in Europe's Cover Image
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Article Category: Community Focus
Published Online: Dec 17, 2020
Page range: 165 - 172
DOI: https://doi.org/10.17225/jhp00169
Keywords
© 2020 Thomas Hughes et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
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%
Language:
English
Publication timeframe:
1 times per year
Journal Subjects:
Medicine, Basic Medical Science, Basic Medical Science, other, Clinical Medicine, Clinical Medicine, other, Pharmacy, Pharmacology
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