PortalPublikationenChallenges of patient-reported outcome assessment in hemophi...

Challenges of patient-reported outcome assessment in hemophilia care—a state of the art review

Standard

Challenges of patient-reported outcome assessment in hemophilia care—a state of the art review. / Bullinger, Monika; Globe, Denise; Wasserman, Joan; Young, Nancy L; von Mackensen, Sylvia.

in: VALUE HEALTH, Jahrgang 12, Nr. 5, 06.06.2009, S. 808-20.

Publikationen: SCORING: Beitrag in Fachzeitschrift/Zeitung › SCORING: Zeitschriftenaufsatz › Forschung › Begutachtung

Harvard

Bullinger, M, Globe, D, Wasserman, J, Young, NL & von Mackensen, S 2009, 'Challenges of patient-reported outcome assessment in hemophilia care—a state of the art review', VALUE HEALTH, Jg. 12, Nr. 5, S. 808-20. https://doi.org/10.1111/j.1524-4733.2009.00523.x

APA

Bullinger, M., Globe, D., Wasserman, J., Young, N. L., & von Mackensen, S. (2009). Challenges of patient-reported outcome assessment in hemophilia care—a state of the art review. VALUE HEALTH, 12(5), 808-20. https://doi.org/10.1111/j.1524-4733.2009.00523.x

Vancouver

Bullinger M, Globe D, Wasserman J, Young NL, von Mackensen S. Challenges of patient-reported outcome assessment in hemophilia care—a state of the art review. VALUE HEALTH. 2009 Jun 6;12(5):808-20. https://doi.org/10.1111/j.1524-4733.2009.00523.x

Bibtex

@article{eb4691dd87f841a2a1fb8d59bf964ff5,
title = "Challenges of patient-reported outcome assessment in hemophilia care—a state of the art review",
abstract = "INTRODUCTION: One of the recent advances in assessing outcomes of medical care is the inclusion of the patient perspective. The term patient-reported outcome (PRO) is used to reflect the patient perceptions of disease and its consequences as well as of treatment and health-care provision. The development of PRO measures has advanced rapidly, and implementation in clinical research and practice is now underway. From an evaluation perspective, recommendations for the choice of PRO measures and an appraisal of the potential benefits of PRO data collection within specific health conditions are needed.METHODS: Hemophilia is a rare and clinically well-defined health condition with established and cost-intensive treatment strategies, in which PRO assessment is increasingly recognized as important. For this reason, measurement of PROs in hemophilia focusing on health-related quality of life (HRQoL) and patient preferences were reviewed to identify appropriate measures, to make recommendations for their choice, and to critically examine their impact in international hemophilia research and practice.RESULTS: Using literature searches and expert discussion strategies, generic and targeted measures for HRQoL and patient preferences in adults and children with hemophilia were screened, and 20 were reviewed on the basis of their psychometric properties and international availability. Only a few of the 20 measures have been used in clinical settings or research related to persons with hemophilia.CONCLUSION: Consequently, an increased use of these measures is recommended to understand patient views on disease and treatment and to judge the impact of PROs for improvements in health care.",
keywords = "Adult, Age Factors, Child, Hemophilia A, Humans, Outcome Assessment (Health Care), Patient Preference, Patient Satisfaction, Quality of Life, Surveys and Questionnaires, Journal Article",
author = "Monika Bullinger and Denise Globe and Joan Wasserman and Young, {Nancy L} and {von Mackensen}, Sylvia",
year = "2009",
month = jun,
day = "6",
doi = "10.1111/j.1524-4733.2009.00523.x",
language = "English",
volume = "12",
pages = "808--20",
journal = "VALUE HEALTH",
issn = "1098-3015",
publisher = "Elsevier Limited",
number = "5",

}

RIS

TY - JOUR

T1 - Challenges of patient-reported outcome assessment in hemophilia care—a state of the art review

AU - Bullinger, Monika

AU - Globe, Denise

AU - Wasserman, Joan

AU - Young, Nancy L

AU - von Mackensen, Sylvia

PY - 2009/6/6

Y1 - 2009/6/6

N2 - INTRODUCTION: One of the recent advances in assessing outcomes of medical care is the inclusion of the patient perspective. The term patient-reported outcome (PRO) is used to reflect the patient perceptions of disease and its consequences as well as of treatment and health-care provision. The development of PRO measures has advanced rapidly, and implementation in clinical research and practice is now underway. From an evaluation perspective, recommendations for the choice of PRO measures and an appraisal of the potential benefits of PRO data collection within specific health conditions are needed.METHODS: Hemophilia is a rare and clinically well-defined health condition with established and cost-intensive treatment strategies, in which PRO assessment is increasingly recognized as important. For this reason, measurement of PROs in hemophilia focusing on health-related quality of life (HRQoL) and patient preferences were reviewed to identify appropriate measures, to make recommendations for their choice, and to critically examine their impact in international hemophilia research and practice.RESULTS: Using literature searches and expert discussion strategies, generic and targeted measures for HRQoL and patient preferences in adults and children with hemophilia were screened, and 20 were reviewed on the basis of their psychometric properties and international availability. Only a few of the 20 measures have been used in clinical settings or research related to persons with hemophilia.CONCLUSION: Consequently, an increased use of these measures is recommended to understand patient views on disease and treatment and to judge the impact of PROs for improvements in health care.

AB - INTRODUCTION: One of the recent advances in assessing outcomes of medical care is the inclusion of the patient perspective. The term patient-reported outcome (PRO) is used to reflect the patient perceptions of disease and its consequences as well as of treatment and health-care provision. The development of PRO measures has advanced rapidly, and implementation in clinical research and practice is now underway. From an evaluation perspective, recommendations for the choice of PRO measures and an appraisal of the potential benefits of PRO data collection within specific health conditions are needed.METHODS: Hemophilia is a rare and clinically well-defined health condition with established and cost-intensive treatment strategies, in which PRO assessment is increasingly recognized as important. For this reason, measurement of PROs in hemophilia focusing on health-related quality of life (HRQoL) and patient preferences were reviewed to identify appropriate measures, to make recommendations for their choice, and to critically examine their impact in international hemophilia research and practice.RESULTS: Using literature searches and expert discussion strategies, generic and targeted measures for HRQoL and patient preferences in adults and children with hemophilia were screened, and 20 were reviewed on the basis of their psychometric properties and international availability. Only a few of the 20 measures have been used in clinical settings or research related to persons with hemophilia.CONCLUSION: Consequently, an increased use of these measures is recommended to understand patient views on disease and treatment and to judge the impact of PROs for improvements in health care.

KW - Adult

KW - Age Factors

KW - Child

KW - Hemophilia A

KW - Humans

KW - Outcome Assessment (Health Care)

KW - Patient Preference

KW - Patient Satisfaction

KW - Quality of Life

KW - Surveys and Questionnaires

KW - Journal Article

U2 - 10.1111/j.1524-4733.2009.00523.x

DO - 10.1111/j.1524-4733.2009.00523.x

M3 - SCORING: Journal article

C2 - 19490552

VL - 12

SP - 808

EP - 820

JO - VALUE HEALTH

JF - VALUE HEALTH

SN - 1098-3015

IS - 5

ER -