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Measuring patient-reported outcomes in haemophilia clinical research

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Measuring patient-reported outcomes in haemophilia clinical research. / Globe, D; Young, N L; Von Mackensen, S; Bullinger, M; Wasserman, J; Healthrelated Quality Of Life Expert Working Group Of The International Prophylaxis Study Group.

In: HAEMOPHILIA, Vol. 15, No. 4, 07.2009, p. 843-52.

Research output: SCORING: Contribution to journal › SCORING: Review article › Research

Harvard

Globe, D, Young, NL, Von Mackensen, S, Bullinger, M, Wasserman, J & Healthrelated Quality Of Life Expert Working Group Of The International Prophylaxis Study Group 2009, 'Measuring patient-reported outcomes in haemophilia clinical research', HAEMOPHILIA, vol. 15, no. 4, pp. 843-52. https://doi.org/10.1111/j.1365-2516.2008.01961.x

APA

Globe, D., Young, N. L., Von Mackensen, S., Bullinger, M., Wasserman, J., & Healthrelated Quality Of Life Expert Working Group Of The International Prophylaxis Study Group (2009). Measuring patient-reported outcomes in haemophilia clinical research. HAEMOPHILIA, 15(4), 843-52. https://doi.org/10.1111/j.1365-2516.2008.01961.x

Vancouver

Globe D, Young NL, Von Mackensen S, Bullinger M, Wasserman J, Healthrelated Quality Of Life Expert Working Group Of The International Prophylaxis Study Group. Measuring patient-reported outcomes in haemophilia clinical research. HAEMOPHILIA. 2009 Jul;15(4):843-52. https://doi.org/10.1111/j.1365-2516.2008.01961.x

Bibtex

@article{cd83a0226c444c0591c183f6d629034e,
title = "Measuring patient-reported outcomes in haemophilia clinical research",
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 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.",
keywords = "Biomedical Research, Hemarthrosis, Hemophilia A, Humans, Outcome Assessment (Health Care), Patient Satisfaction, Quality of Life, Journal Article, Research Support, Non-U.S. Gov't, Review",
author = "D Globe and Young, {N L} and {Von Mackensen}, S and M Bullinger and J Wasserman and {Healthrelated Quality Of Life Expert Working Group Of The International Prophylaxis Study Group}",
year = "2009",
month = jul,
doi = "10.1111/j.1365-2516.2008.01961.x",
language = "English",
volume = "15",
pages = "843--52",
journal = "HAEMOPHILIA",
issn = "1351-8216",
publisher = "Wiley-Blackwell",
number = "4",

}

RIS

TY - JOUR

T1 - Measuring patient-reported outcomes in haemophilia clinical research

AU - Globe, D

AU - Young, N L

AU - Von Mackensen, S

AU - Bullinger, M

AU - Wasserman, J

AU - Healthrelated Quality Of Life Expert Working Group Of The International Prophylaxis Study Group

PY - 2009/7

Y1 - 2009/7

N2 - 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.

AB - 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.

KW - Biomedical Research

KW - Hemarthrosis

KW - Hemophilia A

KW - Humans

KW - Outcome Assessment (Health Care)

KW - Patient Satisfaction

KW - Quality of Life

KW - Journal Article

KW - Research Support, Non-U.S. Gov't

KW - Review

U2 - 10.1111/j.1365-2516.2008.01961.x

DO - 10.1111/j.1365-2516.2008.01961.x

M3 - SCORING: Review article

C2 - 19473425

VL - 15

SP - 843

EP - 852

JO - HAEMOPHILIA

JF - HAEMOPHILIA

SN - 1351-8216

IS - 4

ER -