Measuring patient-reported outcomes in haemophilia clinical research
(2009) In Haemophilia 15(4). p.843-852- Abstract
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... (More)
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.
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- author
- Globe, Dennis ; Young, N. L. ; Von Mackensen, S. ; Bullinger, M. and Wasserman, J.
- contributor
- Blanchette, Victor S.
; Aledort, Louis M.
; Ljung, Rolf
LU
; van den Berg, Marijke
; Feldman, Brian M.
; Gringeri, Alessandro
; Manco-Johnson, Marilyn
; Petrini, Pia
; Rivard, Georges E.
and Schramm, Wolfgang
- organization
- publishing date
- 2009-07-10
- type
- Contribution to journal
- publication status
- published
- keywords
- Factor VIII, Haemophilia, Health status, Primary prophylaxis, Quality of life, Utility
- in
- Haemophilia
- volume
- 15
- issue
- 4
- pages
- 10 pages
- publisher
- Wiley-Blackwell
- external identifiers
-
- pmid:19473425
- scopus:67649876352
- ISSN
- 1351-8216
- DOI
- 10.1111/j.1365-2516.2008.01961.x
- language
- English
- LU publication?
- yes
- id
- 1cdc6427-e57e-46b2-bd80-6653a0094ee4
- date added to LUP
- 2018-10-12 09:52:40
- date last changed
- 2025-01-08 17:13:39
@article{1cdc6427-e57e-46b2-bd80-6653a0094ee4,
abstract = {{<p>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.</p>}},
author = {{Globe, Dennis and Young, N. L. and Von Mackensen, S. and Bullinger, M. and Wasserman, J.}},
issn = {{1351-8216}},
keywords = {{Factor VIII; Haemophilia; Health status; Primary prophylaxis; Quality of life; Utility}},
language = {{eng}},
month = {{07}},
number = {{4}},
pages = {{843--852}},
publisher = {{Wiley-Blackwell}},
series = {{Haemophilia}},
title = {{Measuring patient-reported outcomes in haemophilia clinical research}},
url = {{http://dx.doi.org/10.1111/j.1365-2516.2008.01961.x}},
doi = {{10.1111/j.1365-2516.2008.01961.x}},
volume = {{15}},
year = {{2009}},
}