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Measuring what matters to rare disease patients - reflections on the work by the IRDiRC taskforce on patient-centered outcome measures

Orphanet journal of rare diseases, 2017-11, Vol.12 (1), p.171-171, Article 171

2017

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Using Classical Test Theory, Item Response Theory, and Rasch Measurement Theory to Evaluate Patient-Reported Outcome Measures: A Comparison of Worked Examples

Value in health, 2015, Vol.18 (1), p.25-34

2015

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Rating scales as outcome measures for clinical trials in neurology: problems, solutions, and recommendations

Lancet neurology, 2007-12, Vol.6 (12), p.1094-1105

2007

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Person-Centered Outcome Metrology: Principles and Applications for High Stakes Decision Making

1, 2023

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The Anti-Clot Treatment Scale (ACTS) in clinical trials: cross-cultural validation in venous thromboembolism patients

Health and quality of life outcomes, 2012-09, Vol.10 (1), p.120-120

2012

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Psychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countries

Canadian Medical Association journal (CMAJ), 2018-04, Vol.190 (15), p.E455-E462

2018

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Further psychometric validation of the BODY-Q: ability to detect change following bariatric surgery weight gain and loss

Health and quality of life outcomes, 2017-11, Vol.15 (1), p.227-227, Article 227

2017

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Validation of the electronic version of the BREAST-Q in the army of women study

Breast (Edinburgh), 2017-06, Vol.33, p.44-49

2017

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A systematic review of patient-reported outcome instruments of nonmelanoma skin cancer in the dermatologic population

Journal of the American Academy of Dermatology, 2013-08, Vol.69 (2), p.e59-e67

2013

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A systematic review of patient-reported outcome measures after facial cosmetic surgery and/or nonsurgical facial rejuvenation

Plastic and reconstructive surgery (1963), 2009-06, Vol.123 (6), p.1819-1827

2009

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A closer look at the BREAST-Q(©)

Clinics in plastic surgery, 2013-04, Vol.40 (2), p.287-296

2013

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Qualitative study informing the development and content validity of the HAND-Q: a modular patient-reported outcome measure for hand conditions

BMJ open, 2022-04, Vol.12 (4), p.e052780-e052780

2022

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Satisfaction and quality of life in women who undergo breast surgery: a qualitative study

BMC women's health, 2009-05, Vol.9 (11), p.11-11, Article 11

2009

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An international mixed methods study to develop a new preference-based measure for women with breast cancer: the BREAST-Q Utility module

BMC women's health, 2021-01, Vol.21 (1), p.8-8, Article 8

2021

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Measuring Quality of Life in Dysphonic Patients: A Systematic Review of Content Development in Patient-Reported Outcomes Measures

Journal of voice, 2010-03, Vol.24 (2), p.193-198

2010

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Re-examining content validity of the BREAST-Q more than a decade later to determine relevance and comprehensiveness

Journal of patient-reported outcomes, 2023-04, Vol.7 (1), p.37-37, Article 37

2023

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Giving Meaning to Differences in BREAST-Q Scores: Minimal Important Difference for Breast Reconstruction Patients

Plastic and reconstructive surgery (1963), 2020-01, Vol.145 (1), p.11e-20e

2020

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The development of scales to measure childhood cancer survivors' readiness for transition to long‐term follow‐up care as adults

Health expectations : an international journal of public participation in health care and health policy, 2015-12, Vol.18 (6), p.1941-1955

2015

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Assessing outcomes in body contouring

Clinics in plastic surgery, 2014-10, Vol.41 (4), p.645-654

2014

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A predictive model for corticosteroid response in individual patients with MS relapses

PloS one, 2015-03, Vol.10 (3), p.e0120829-e0120829

2015

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Development of a new patient-reported outcome measure for breast surgery: the BREAST-Q

Plastic and reconstructive surgery (1963), 2009-08, Vol.124 (2), p.345-353

2009

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FACE-Q scales for health-related quality of life, early life impact, satisfaction with outcomes, and decision to have treatment: development and validation

Plastic and reconstructive surgery (1963), 2015-02, Vol.135 (2), p.375

2015

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BODY-Q Normative Scores: Psychometric Validation of the BODY-Q in the General Population in Europe and North America

Plastic and reconstructive surgery. Global open, 2023-11, Vol.11 (11), p.e5401-e5401

2023

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The BREAST-Q in surgical research: A review of the literature 2009–2015

Journal of plastic, reconstructive & aesthetic surgery, 2016-02, Vol.69 (2), p.149-162

2016

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The BREAST-Q: Further Validation in Independent Clinical Samples

Plastic and reconstructive surgery (1963), 2012-02, Vol.129 (2), p.293-302

2012

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Measuring what matters to rare disease patients - reflections on the work by the IRDiRC taskforce on patient-centered outcome measures

Using Classical Test Theory, Item Response Theory, and Rasch Measurement Theory to Evaluate Patient-Reported Outcome Measures: A Comparison of Worked Examples

Rating scales as outcome measures for clinical trials in neurology: problems, solutions, and recommendations

Person-Centered Outcome Metrology: Principles and Applications for High Stakes Decision Making

The Anti-Clot Treatment Scale (ACTS) in clinical trials: cross-cultural validation in venous thromboembolism patients

Psychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countries

Further psychometric validation of the BODY-Q: ability to detect change following bariatric surgery weight gain and loss

Validation of the electronic version of the BREAST-Q in the army of women study

A systematic review of patient-reported outcome instruments of nonmelanoma skin cancer in the dermatologic population

A systematic review of patient-reported outcome measures after facial cosmetic surgery and/or nonsurgical facial rejuvenation

A closer look at the BREAST-Q(©)

Qualitative study informing the development and content validity of the HAND-Q: a modular patient-reported outcome measure for hand conditions

Satisfaction and quality of life in women who undergo breast surgery: a qualitative study

An international mixed methods study to develop a new preference-based measure for women with breast cancer: the BREAST-Q Utility module

Measuring Quality of Life in Dysphonic Patients: A Systematic Review of Content Development in Patient-Reported Outcomes Measures

Re-examining content validity of the BREAST-Q more than a decade later to determine relevance and comprehensiveness

Giving Meaning to Differences in BREAST-Q Scores: Minimal Important Difference for Breast Reconstruction Patients

The development of scales to measure childhood cancer survivors' readiness for transition to long‐term follow‐up care as adults

Assessing outcomes in body contouring

A predictive model for corticosteroid response in individual patients with MS relapses

Development of a new patient-reported outcome measure for breast surgery: the BREAST-Q

FACE-Q scales for health-related quality of life, early life impact, satisfaction with outcomes, and decision to have treatment: development and validation

BODY-Q Normative Scores: Psychometric Validation of the BODY-Q in the General Population in Europe and North America

The BREAST-Q in surgical research: A review of the literature 2009–2015

The BREAST-Q: Further Validation in Independent Clinical Samples

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