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Journal of the American Academy of Dermatology
Volume 54, n° 6
pages 987.e1-987.e14 (juin 2006)
Doi : 10.1016/j.jaad.2006.02.003
REPORTS

Development and reliability testing of a standardized questionnaire to assess psoriasis phenotype
 

Alison Ehrlich, MD, MHS a, , Troy Koch, MD a, Bijal Amin, MD a, David J. Liewehr, MS b, Seth M. Steinberg, PhD b, Maria L. Turner, MD c, Andrew Blauvelt, MD c
a From the Department of Dermatology, George Washington University, Washington, DC 
b Biostatistics and Data Management Section, Office of the Clinical Director 
c Dermatology Branch, Center for Cancer Research, National Cancer Institute, Bethesda 

Reprint requests: Alison Ehrlich, MD, MHS, Department of Dermatology, George Washington University, 2150 Pennsylvania Ave, NW, Ste 6A-404, Washington, DC 20037.

Washington, DC, and Bethesda, Maryland

Abstract
Background

Psoriasis genetics researchers have utilized separate and widely differing survey instruments to capture clinical data to be utilized in genotype-phenotype studies, which make comparison and collaboration studies among these researchers difficult.

Objective

The purpose of this study was to develop and validate a clinical survey instrument to facilitate future collaborative genotype-phenotype studies among psoriasis genetics researchers.

Methods

The Delphi method was employed to obtain international consensus on components of the novel survey instrument. The survey was pretested for acceptability purposes, and then formally tested for reliability using 3 independent raters interviewing 48 subjects with psoriasis.

Results

Data showed high or moderately high agreement for questions relating to place of birth (85% to 100% in agreement), family origin (κ = 0.48 -1.0), psoriasis history (κ = 0.66-1.0), patient medical history (κ = 0.76-1.0), distribution of lesions (κ = 0.73-1.0), precipitating factors (κ = 0.79-1.0), joint involvement (κ = 0.74-.91), and treatment history, including use of oral retinoids, methotrexate, and etanercept (κ = 0.73-1.0). Other parameters had lower degrees of agreement.

Limitations

The time involved and the need for the rater to be a clinician with knowledge of psoriasis may preclude widespread use of this survey instrument.

Conclusion

We developed a novel, reliable survey instrument that can be used to gather clinical information in a standardized manner from psoriasis patients participating in clinical and genetics research studies.

The full text of this article is available in PDF format.

 Supported by the Intramural Research Program of the National Institutes of Health, National Cancer Institute, Center for Cancer Research.
Conflicts of interest: None identified.



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