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Measuring patient-r...
Measuring patient-reported outcomes in haemophilia clinical research
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- Globe, Dennis (author)
- Amgen Inc.
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- Young, N. L. (author)
- Laurentian University
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- Von Mackensen, S. (author)
- University Medical Center Hamburg-Eppendorf
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- Bullinger, M. (author)
- University Medical Center Hamburg-Eppendorf
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- Wasserman, J. (author)
- University of Texas
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Blanchette, Victor S. (creator_code:cre_t)
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Aledort, Louis M. (creator_code:cre_t)
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- Ljung, Rolf (creator_code:cre_t)
- Lund University,Lunds universitet,Pediatrik, Lund,Sektion V,Institutionen för kliniska vetenskaper, Lund,Medicinska fakulteten,Pediatrisk hematologi,Forskargrupper vid Lunds universitet,Paediatrics (Lund),Section V,Department of Clinical Sciences, Lund,Faculty of Medicine,Paediatric Haematology Research Unit,Lund University Research Groups
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van den Berg, Marijke (creator_code:cre_t)
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Feldman, Brian M. (creator_code:cre_t)
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Gringeri, Alessandro (creator_code:cre_t)
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Manco-Johnson, Marilyn (creator_code:cre_t)
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Petrini, Pia (creator_code:cre_t)
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Rivard, Georges E. (creator_code:cre_t)
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Schramm, Wolfgang (creator_code:cre_t)
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Amgen Inc Laurentian University (creator_code:org_t)
- Wiley, 2009
- 2009
- English 10 s.
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In: Haemophilia. - : Wiley. - 1351-8216 .- 1365-2516. ; 15:4, s. 843-852
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http://dx.doi.org/10...
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https://lup.lub.lu.s...
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Abstract
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- Patient-reported outcome (PRO) measures have been used to assess quality of life and health state preferences from the patient's perspective. However, they have not been fully utilized in haemophilia clinical practice and research. A series of meetings were convened to review and document the state of the art in PROs relevant to haemophilia. Experts developed a process for selection of measures and identified published measures of health-related quality of life (HRQoL) relevant to patients with haemophilia. These were synthesized and reviewed. Patient preference measures were also identified and reviewed. Although the majority of measures were developed for and validated in adults, several measures were identified for use in paediatric populations. This paper recommends an approach to the selection of PROs for application in haemophilia clinical research and practice and identifies several potential measures relevant for application in haemophilia clinical research and practice.
Keyword
- Factor VIII
- Haemophilia
- Health status
- Primary prophylaxis
- Quality of life
- Utility
Publication and Content Type
- for (subject category)
- ref (subject category)
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- By the author/editor
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Globe, Dennis
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Young, N. L.
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Von Mackensen, S ...
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Bullinger, M.
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Wasserman, J.
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Blanchette, Vict ...
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show more...
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Aledort, Louis M ...
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Ljung, Rolf
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van den Berg, Ma ...
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Feldman, Brian M ...
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Gringeri, Alessa ...
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Manco-Johnson, M ...
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Petrini, Pia
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Rivard, Georges ...
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Schramm, Wolfgan ...
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show less...
- Articles in the publication
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Haemophilia
- By the university
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Lund University