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Measuring patient-reported outcomes in haemophilia clinical research

Globe, Dennis ; Young, N. L. ; Von Mackensen, S. ; Bullinger, M. and Wasserman, J. (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
; ; ; and
contributor
Blanchette, Victor S. ; Aledort, Louis M. ; LU ; van den Berg, Marijke ; Feldman, Brian M. ; Gringeri, Alessandro ; Manco-Johnson, Marilyn ; Petrini, Pia ; Rivard, Georges E. and Schramm, Wolfgang
organization
publishing date
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
Federation of European Neuroscience Societies and Blackwell Publishing Ltd
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
2020-01-13 01:03:02
@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},
  language     = {eng},
  month        = {07},
  number       = {4},
  pages        = {843--852},
  publisher    = {Federation of European Neuroscience Societies and Blackwell Publishing Ltd},
  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},
}