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A Method for Designing a Patient Burden Questionnaire in Dermatology

Authors Ezzedine K, Bennani M, Shourick J, Taieb C

Received 28 April 2020

Accepted for publication 7 July 2020

Published 6 August 2020 Volume 2020:13 Pages 521—528

DOI https://doi.org/10.2147/CCID.S260323

Checked for plagiarism Yes

Review by Single anonymous peer review

Peer reviewer comments 3

Editor who approved publication: Dr Jeffrey Weinberg


Khaled Ezzedine,1 Mohammed Bennani,2 Jason Shourick,3 Charles Taieb4,5

1University Hospital Henri-Mondor, Department of Dermatology, Créteil, France; 2Qualees, Paris, France; 3University of Paris-Sud, Paris, France; 4Necker Enfants Malades Hospital, Paris, France; 5European Market Maintenance Assessment, Paris, France

Correspondence: Charles Taieb
European Market Maintenance Assessment, 94120 Fontenay-sous-Bois, Paris, France
Tel +33 771 772 100
Email charles.taieb@emma.clinic

Introduction: In recent years, the concept of “disease burden” has been given a central role in evaluating patient care, particularly in skin diseases. Measuring patient-reported outcomes (PRO) such as symptoms and disease burden may be useful.
Aim: To present a methodology that facilitates the development and validation of burden questionnaires for patients suffering from skin diseases.
Methodology: Based on past published burden questionnaires, a methodology for designing skin disease burden questionnaires was to be developed.
Results: Based on 16 burden questionnaires developed and published over the last 10 years, the authors propose a standardized methodology for the easy design and validation of disease burden questionnaires for patients with chronic skin diseases. The authors provide detailed guidance for the conception, development and validation of the questionnaires, including reliability, internal consistency, external validity, cognitive debriefing, testing–retesting, translation and cross-cultural adaptation, as well as for statistical analysis.
Conclusion: The proposed methodology enhances the design and validation of disease burden questionnaires in dermatology. Burden questionnaires may be used in clinical research as well as in daily clinical practice.

Keywords: individual burden, dermatology, method, patient-reported outcome, questionnaire

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